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Event Blog


  • December 8, 2017

  • Congratulations to Cancer 101’s Sarah Krug on 15 Years!

    Congratulations to Cancer 101’s CEO Sarah Krug on the 15th anniversary of the beloved non-profit. Cancer 101 was founded by Monica Knoll as the result of her own cancer journey, which came to an end in 2011, but her dream of helping so many others continue to shine through Sarah’s leadership. Cancer 101 provides tool kits […]

    Sarah Krug presenting at Patients as Partners

    Congratulations to Cancer 101’s CEO Sarah Krug on the 15th anniversary of the beloved non-profit. Cancer 101 was founded by Monica Knoll as the result of her own cancer journey, which came to an end in 2011, but her dream of helping so many others continue to shine through Sarah’s leadership. Cancer 101 provides tool kits to cancer patients from diagnosis to recovery, helping them be stronger advocates in their own care. They also provide helpful resources, information on clinical trials, questions to ask doctors, how to manage finances and so much more including:


    Prescription to Learn

    Sarah is both a speaker and an advisor at the Conference Forum and we are so lucky to work with her on Patients as Partners and DPharm. Learn more about Cancer 101.
     
    Inline image 1

    CANCER101 Celebrates 15 Years

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  • November 7, 2017

  • The Gap Between Clinical Care, Patient Involvement & What Patients Want

    Originally recorded during the 4th annual Patients as Partners US event held in Philadelphia, March 2017, Bristol-Myers Squibb’s Mary Stober-Murray moderates this multi-stakeholder panel to discuss what patients truly want when it comes to clinical care and patient involvement. Patients John Creveling, a Parkinson’s Foundation Research Advocate, and Deb Maskens from the International Kidney Cancer Coalition, […]

    Originally recorded during the 4th annual Patients as Partners US event held in Philadelphia, March 2017, Bristol-Myers Squibb’s Mary Stober-Murray moderates this multi-stakeholder panel to discuss what patients truly want when it comes to clinical care and patient involvement. Patients John Creveling, a Parkinson’s Foundation Research Advocate, and Deb Maskens from the International Kidney Cancer Coalition, join her and representing the industry perspective are Paul Graves from Takeda Pharmaceuticals and Dr Michelle Vichnin from Merck.

    Closing the gap between clinical care and patients wants/needs:

    • Ask patients what’s going on in their lives.
    • Ask patients what their goals are.
    • Because no one asks patients these questions, the result is they get care that’s aligned with what the doctor thinks is clinically relevant, even though it may be completely out of context to what is important to the patient.

    What patients want and how pharma can help:

    • Identify what patients and industry want respectively in terms of patient involvement and why that is meaningful for each.
    • What can we do to enhance this across the development pipeline?
    • What is getting in the way? Identify hurdles.
    • How can we work through this collaboratively?

    Initially developed out of the first DPharm event, the Patients as Partners US program seeks to understand and incorporate the patient’s voice in designing clinical trials and developing a clinical endpoint, as well as vastly improve the patient’s entire experience in a clinical trial. The 5th annual Patients as Partners US will be March 15-16, 2018, in Philadelphia.

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  • October 9, 2017

  • Opera Singer and Double Lung Transplant Recipient Charity Tillemann-Dick Publishes The Encore

    Congratulations to Charity Tillemann-Dick on her new memoir, The Encore. We recently had the opportunity to meet up with Charity at her NYC book signing, where we were also joined by DPharm patient keynote, Jessica Melore. Charity gave a deeply moving and memorable keynote at the 5th annual DPharm conference based on her experience as an opera singer, who […]

    Congratulations to Charity Tillemann-Dick on her new memoir, The Encore. We recently had the opportunity to meet up with Charity at her NYC book signing, where we were also joined by DPharm patient keynote, Jessica Melore.

    Charity Tillemann-Dick-Keynote-2015

    Charity Tillemann-Dick keynoting at the 5th Annual DPharm Conference

    Charity gave a deeply moving and memorable keynote at the 5th annual DPharm conference based on her experience as an opera singer, who survived a debilitating and usually fatal lung disease by having two double-lung transplant operations at the Cleveland Clinic.

    Charity and Valerie

    Valerie Bowling Congratulating Charity Tillemann-Dick on Publishing her Memoir, The Encore

    Valerie Jessica Charity

    Valerie Bowling, Jessica Melore and Charity Tillemnn-Dick Celebrating the Publishing of The Encore

    Charity is one of 11 brothers and sisters and the granddaughter of Tom Lantos, the only Holocaust survivor to have served in the United States Congress. She was home schooled as a child and went on to study at the Franz Liszt Academy of Music in Budapest.

    Charity’s memoir takes readers through her miraculous journey, which truly mirrors those of opera heroines, and includes her surgeries, her recovery and learning to sing with someone else’s lungs.

    The Encore is published by Simon and Shuster and you can order it on Amazon here: https://www.amazon.com/dp/1501102311/ref=rdr_ext_tmb

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  • August 25, 2017

  • PharmaTalkRadio: Why Pharma R&D has to Start Thinking Like a Service Industry and How?

    The Conference Forum is pleased to share a podcast featuring keynote speaker and world renowned customer service expert, Dr Chip Bell who spoke at the 6th annual DPharm: Disruptive Innovations to Advance Clinical Trials on the topic of service in clinical trials. To truly service our patients, we need to understand service together with science. Can service be a […]

    The Conference Forum is pleased to share a podcast featuring keynote speaker and world renowned customer service expert, Dr Chip Bell who spoke at the 6th annual DPharm: Disruptive Innovations to Advance Clinical Trials on the topic of service in clinical trials.

    To truly service our patients, we need to understand service together with science. Can service be a disrupter in clinical research? In this keynote, Dr Bell tells us how to think like a service industry, why it’s worth it for R&D and how to get started. Dr Bell gives the listener practical insights on how to give patients a great experience. Although this podcast is primarily focused on serving patients in clinical research, you will find that hospitals and physician offices/medical groups will also benefit.

    The 7th annual DPharm conference will continue to cover service, but through a patient perspective. DPharm 2017 takes place September 7-8 in Boston. For more information, click here.

    About Dr Chip Bell:
    Dr Bell is considered a world-renowned authority on customer loyalty and service innovation. He has authored eight national best-selling books. For more information visit, www.chipbell.com.

     

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  • June 12, 2017

  • CMO Speaker, Dr David Schenkein Writes About Bringing Clinical Trials to Patients

    Recently, the Conference Forum presented Clinical Research as a Care Option, which was chaired by Katherine Vandebelt, Formerly, Global Head, Clinical Innovation, Eli Lilly and Jeff James, CEO, Wilmington Health. So we were thrilled to see that Dr David Schenkein, CEO, Agios Pharma, who keynoted in 2015 at the Chief Medical Officer Summit recently published […]

    Recently, the Conference Forum presented Clinical Research as a Care Option, which was chaired by Katherine Vandebelt, Formerly, Global Head, Clinical Innovation, Eli Lilly and Jeff James, CEO, Wilmington Health. So we were thrilled to see that Dr David Schenkein, CEO, Agios Pharma, who keynoted in 2015 at the Chief Medical Officer Summit recently published on Linkedin his view on the topic of bringing trials closer to patients. See below:

    To Get Patients into Clinical Trials, We Need to Get Clinical Trials to Patients

    The other day, an Agios employee, Holly, took an Uber to make a midday meeting. The driver mentioned that he was from out of town and welcomed any shortcuts to get to their destination. She asked where he was from, and during her brief ride, she learned that he drove an elderly woman from New Hampshire to Boston twice a week so she could participate in a clinical trial for a new cancer treatment at Mass General Hospital. It was a two-hour trip each way, and the treatment took four hours, so he filled that time giving rides close to the hospital.

    For the rest of the day, this woman’s story clung with Holly, who found herself wondering if she had friends or family with her at the hospital, what investigational medicine she was taking and if it made her sick on the long drive home. When Holly shared her experience with me, despite the pangs of sympathy, I found solace in the fact that this woman lives within driving distance of one of the leading cancer centers in the U.S., giving her access to the most advanced cancer care and potentially lifesaving clinical trials.

    Though the time commitment is significant and the cost of transportation is likely high, her situation is a stark contrast to the estimated 85 percent of cancer patients around the country who receive care in a community setting, where clinical trials are less likely to be offered. I’ve written before about my own experiences with the harsh emotional reality of participating in studies of new treatments, but low enrollment can also be attributed to geography. The truth is, most patients don’t live near a hospital or academic center that offers clinical trials, which can often be life-saving options for people who have already received approved therapies. Recent studies suggest that outcomes can vary widely depending on where patients receive care.

    There are many factors driving the inequities between cancer care and clinical trial access at academic health centers vs. community hospitals – including infrastructure costs, required FDA guidelines for clinical trials, necessary staff support, etc. Bridging that divide is something a colleague and friend of mine, Keith Flaherty, M.D., has spent much of his career trying to address. Dr. Flaherty is the Director of Developmental Therapeutics Clinical Research at the Massachusetts General Hospital Cancer Center and professor of medicine at Harvard Medical School. He also serves as the principal investigator for a clinical trial called NCI-MATCH, which is a study launched in August 2015 that analyzes patients’ tumors to determine whether they contain gene abnormalities for which a targeted drug exists and assigns treatment based on the abnormality. This study brings genomic testing and access to 30 targeted therapies to 6,000 patients at hundreds of hospitals and more than 1000 healthcare locations across the U.S. at no cost to the patient or treatment center.

    I spoke with Dr. Flaherty a few weeks ago to get his perspective on NCI-MATCH and the future of clinical trial access outside of big research centers. Here’s what he had to say.

    David:
    What does the future look like for clinical trials over the next few years?

    Dr. Flaherty:
    It’s suffice to say there’s a big gap and a big unmet need, and we must figure out how to move forward given that NCI-MATCH is about to end and a large clinical investigation community is going to lose access to genetic testing and clinical trial options. I recently co-founded a company called Strata Oncology, which aims to potentially perform an NCI-MATCH-like function. We’re focusing on driving clinical trial participation in regional networks outside of academic medical centers, which allows patients to stay in their community and creates a much more efficient process for matching them to clinical trials of targeted therapies.

    David:
    Certainly this addresses one of the bigger issues of identifying patients for biomarker-driven studies, which is critical. How has NCI-MATCH created the infrastructure in smaller community settings to make it easier to put a patient on a study and/or get a sponsor to use a small hospital that may only bring in one or two patients?

    Dr. Flaherty:
    Providing small hospitals with the genomic tests to identify biomarkers is pretty straightforward and a good place to start. Creating the necessary clinical trial infrastructure piece is doable. It just requires stripping out some of the bells and whistles. Part of this is reducing the amount of data that these hospitals are required to collect for trials. With fewer resources, community centers can only do so much, so studies have to be structured in a way that allows them to capture registration-quality data, which isn’t feasible if they’re being asked for 1,000 data points per patient.

    David:
    As you look ahead of the next 5 years, in terms of a change to the model and how we conduct clinical trials, do you believe we’ll see more biomarker-driven trials being offered in communities?

    Dr. Flaherty:
    I do believe that some version of democratizing clinical trial access will happen. I think it has to start with a coalition of sponsors who are looking for sparsely distributed, genetically defined patients in order to make it reasonably efficient. Together, we need to figure out a geographically smart way to get these clinical trials to where patients are, and streamline what we’re asking for in these community settings. This could easily double the percentage of patients who enroll in trials nationwide.

    For the benefit of the millions of people with cancer who are or will be treated in a community hospital, I hope Dr. Flaherty is right.

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  • May 18, 2017

  • CISCRP Launches Clinical Trial Awareness Campaign Nationwide with T.J. Sharpe

    We are pleased to share that one of our partners, CISCRP, has launched the National Clinical Trial Outreach and Awareness Initiative to reach millions of Americans to inform the public and patients about the clinical research process. We are delighted to see that their first ad features one of our patient advocate speakers, TJ Sharp. […]

    We are pleased to share that one of our partners, CISCRP, has launched the National Clinical Trial Outreach and Awareness Initiative to reach millions of Americans to inform the public and patients about the clinical research process. We are delighted to see that their first ad features one of our patient advocate speakers, TJ Sharp. TJ is a metastatic melanoma survivor and medical hero. To learn more about the campaign, read the press release.

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  • April 3, 2017

  • Congratulations to Conference Forum Speakers Dr Robert Califf, Craig Lipset, and Marc Boutin on their Leadership Roles in the Newly Formed People-Centered Research Foundation

    Source: Healthcare Informatics March 27, 2017 by David Raths Robert Califf, M.D., who stepped down as commissioner of the U.S. Food and Drug Administration in January, has been named chair of a new nonprofit organization, the People-Centered Research Foundation, which has been created to sustain and expand a national network for clinical research that originated […]

    Source:
    Healthcare Informatics

    March 27, 2017
    by David Raths

    Robert Califf, M.D., who stepped down as commissioner of the U.S. Food and Drug Administration in January, has been named chair of a new nonprofit organization, the People-Centered Research Foundation, which has been created to sustain and expand a national network for clinical research that originated with funding from the Patient-Centered Outcomes Research Institute (PCORI) and studies conducted by the national Patient-Centered Clinical Research Network (PCORnet).

    The PCORI web site said its board of governors has agreed to provide up to $25.4 million in additional infrastructure-building funds to support the long-term sustainability of PCORnet through PCRF, which was formed by PCORnet investigators to advance and support the network’s sustainability.

    On its web site, PCRF said it would provide retrospective observational research using its data network, prospective research that collects new data from patients, and high-impact clinical trials. “Each study will deeply engage patients and clinicians in its design, conduct, and dissemination. A balanced mix of support from government, foundations, and industry will sponsor the studies. All projects will be aligned with the foundation’s mission of centering projects around the needs of people and their health.”

    Califf also has returned to the Duke Clinical Research Institute, which he founded in 2006, as the Donald F. Fortin professor of cardiology. In a letter on the nonprofit’s web site, he said that PCRF would integrate people into all phases of research and the learning health system. “Patients, participants, patient advocates, and caregivers will constitute a meaningful percentage of our board; be involved in leadership roles in all committees; and participate in the development and execution of the research.”

    He added that PCRF has a robust business plan in place, with seven members of what could grow to be a 13-member board, and plans to build a program management office that will be led by an executive director.

    The other board members are:

    • Richard Bankowitz, MD, MBA, FACP, Executive Vice President, Clinical Affairs, America’s Health Insurance Plans (AHIP)
    • Josephine P. Briggs, MD, Director, National Center for Complementary and Integrative Health (NCCIH)
    • Marc M. Boutin, JD, Chief Executive Officer, National Health Council (NHC)
    • Donna Cryer, President & CEO of the Global Liver Institute
    • Craig Lipset, MBA, Head of Clinical Innovation, Worldwide Research & Development, Pfizer Inc.
    • Joanne Waldstreicher, MD, Chief Medical Officer, Johnson & Johnson

    Dr Robert Califf recently spoke at the R&D Leadership Summit and spoke at the Clinical Trial Collaborations conference. Marc Boutin also recently spoke at the R&D Leadership Summit and is a lead advisor and speaker at the Patients as Partners US conference. Craig Lipset is the co-chair of the DPharm: Disruptive Innovations to Advance Clinical Trials conference and spoke at the inaugural Clinical Research as a Care Option program.

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  • March 9, 2017

  • New York Times Article on Informed Patients by Cleveland Clinic Doctors

    Rachel Taliciero, DO, Director of Postgraduate Enrichment, Center for Excellence in Healthcare Communication, Office of Patient Experience at the Cleveland Clinic presented a moving session on the power of empathy at Patients as Partners US on March 3, 2017. During the session, she focused on putting patients first and discussed how the Cleveland Clinic became the first […]

    Rachel Taliciero, DO, Director of Postgraduate Enrichment, Center for Excellence in Healthcare Communication, Office of Patient Experience at the Cleveland Clinic presented a moving session on the power of empathy at Patients as Partners US on March 3, 2017. During the session, she focused on putting patients first and discussed how the Cleveland Clinic became the first major academic medical center to make patient experience a strategic goal.

    Taliciero’s colleagues, Dr Mikkael Sekeres, Director of the Leukemia Program, and Dr Timothy Gilligan, Director of Coaching at Center for Excellence in Healthcare Communication, wrote an article printed in The New York Times on March 7, 2017, titled, “Informed Patient? Don’t Bet on It” (pg. D6). An excerpt of the article is below, listing Dr Sekeres’ and Dr Gilligan’s requests and recommendations to better inform patients and to work with them as partners.
    “So here’s our request:
    • Ask us to use common words and terms. If your doctor says that you’ll end up with a “simple iliac ileal conduit” or a “urostomy,” feel free to say “I don’t understand those words. Can you explain what that means?”
    • Summarize back what you heard. “So I should split my birth control pills in half and take half myself and give the other half to my boyfriend?” That way, if you’ve misunderstood what we did a poor job of explaining, there will be a chance to straighten it out: “No, that’s not right. You should take the whole pill yourself.”
    • Request written materials, or even pictures or videos. We all learn in different ways and at different paces, and “hard copies” of information that you can take time to absorb at home may be more helpful than the few minutes in our offices.
    • Ask for best-case, worst-case, and most likely scenarios, along with the chance of each one occurring.
    • Ask if you can talk to someone who has undergone the surgery, or received the chemotherapy. That person will have a different kind of understanding of what the experience was like than we do.
    • Explore alternative treatment options, along with the advantages and disadvantages of each. “If I saw 10 different experts in my condition, how many would recommend the same treatment you are recommending?”
    • Take notes, and bring someone else to your appointments to be your advocate, ask the questions you may be reluctant to, and be your “accessory brain,” to help process the information we are trying to convey.
    We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care.”
    Read the entire piece in the The New York Times article.

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  • February 28, 2017

  • Rare Disease Day 2017 Focuses on Research and Patient Involvement

    Worldwide, hundreds of patient organizations are holding awareness-raising activities based on the theme of research, because “with research, possibilities are limitless.”  Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. Patient involvement in research has resulted in more research, which is […]

    Rare Disease DayWorldwide, hundreds of patient organizations are holding awareness-raising activities based on the theme of research, because “with research, possibilities are limitless.” 

    Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process.

    The idea for our Patients as Partners conference arose seven years ago, when our Disrupting Clinical Trials (DPharm) audience was asked, “When was the last time you thanked your patients for being in a clinical trial?” and no one raised their hand. Immediately we saw the need for a conference on service for patients in clinical trials. However, more importantly, we saw the urgent need for the patient perspective in driving a conference on collaborating in clinical research.

    Patients and patient research taught us empathy not only with their disease, but with their lifestyle and struggles in finding and experiencing a clinical trial. In particular, we learned the need to:

    1. Understand and incorporate the patient’s voice in designing clinical trials and developing a clinical endpoint.
    2. Vastly improve the patient’s entire experience in a clinical trial.

    The Conference Forum is proud to participate in 2017’s Rare Disease Day as we continue to advocate for patient-led research. If it were not for patient research, we would not have a conference 100% designed for the benefit of the patient. Join us this week to learn about new research into creating patient centricity as the ecosystem within pharma at the 4th Annual Patients as Partners US, March 2-3. Learn more about #Patients2017 and register here: http://bit.ly/12nEslG

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  • December 7, 2016

  • Patients as Partners Opens in Europe this February in London

    At the request of our European attendees at the Patients as Partners US event to bring the conference to Europe, we are delighted to announce we are doing just that on February 6-7, 2017 in London. Patients as Partners EU is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program […]

    At the request of our European attendees at the Patients as Partners US event to bring the conference to Europe, we are delighted to announce we are doing just that on February 6-7, 2017 in London. Patients as Partners EU is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program that addresses the needs of all stakeholders seeking to implement and advance patient involvement across the entire clinical development continuum. The US conference will take place March 2-3, 2017 in Philadelphia. Patients UK

    Each session at the 2017 conference seeks to put ideas into action and must demonstrate the what, where, when and how behind the topic. For example, when addressing the topic of, “How to Incorporate Patient Insights in Clinical Research,” the speaker representing AstraZeneca will show the planning, process and tools used to obtain the patient insights. They will also demonstrate how these insights were used to co-create solutions with patients and measure the impact of those initiatives.

    Most of the sessions have at least one confirmed patient speaker to ensure the patient perspective is represented for the topic at hand.

    Introducing “Ask the Patient”

    We will introduce for the first time in Europe, the “Ask the Patient” program. This is an opportunity for attendees to meet face-to-face with patients who experienced at least one clinical trial. These patients, our Medical Heroes, will be attending the conference, providing a unique opportunity to learn about the realities of a clinical trial directly from the patient’s point of view. Opportunities to meet with patients will be both assigned and unassigned throughout the program.

    “Patients Included” Accredited

    Patients Included logo 200 x 200

    Patients as Partners Europe is accredited by “Patients Included” (patientsincluded.org) to help address what matters most to patients to enable them to support clinical research. “Patients Included” provides a blueprint for:

    – Understanding and incorporating the patient’s voice in designing clinical trials and developing a clinical endpoint

    – Vastly improving the patient’s entire experience in a clinical trial

    – Empowering the patient in the new medicines development process

    Patients as Partners Europe is co-chaired by:

    clare-grace-web

     

     

    Clare Grace, PhD
    VP, Site and Patient Access, INC Research

    hoos_anton-web

     

     

    Anton Hoos, MD, PhD, MBA
    Head of Medical, Amgen Europe

    The goal of creating patient-centricity as the ecosystem within pharma cannot be achieved without patient involvement.

    A special thanks to our patient, industry and academic advisors for their unwavering guidance and expertise in helping us develop an agenda that puts the “discussion” around patient involvement into action across the entire clinical development continuum. For more information, visit here or go to www.theconferenceforum.org. Take note there is a 15% launch discount off the first early bird with code PEUL15.

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  • November 16, 2016

  • Patients as Partners Speakers Collaborate on Inaugural Patient Engagement White Paper

    Patients as Partners EU and US speakers including Marc Boutin, National Health Council, Tony Hoos, Amgen EU, Andrew Garvey, GSK, Jan Geissler, EUPATI, Veronica Todaro, Parkinson’s Disease Foundation, Roslyn Schneider, Pfizer and Sarah Krüg, Cancer 101, collaborated on an inaugural white paper focusing on culture and process change as a priority for patient engagement. Patient Focused Medicine’s […]

    patients-2017-whitepaper-authors

    From Left to Right: Marc Boutin (NHC), Jan Geissler (EUPATI), Roslyn Schneider (Pfizer), Tony Hoos (Amgen EU), Veronica Todaro (Parkinson’s Disease Foundation), Sarah Krüg (Cancer 101), Andrew Garvey (GSK)


    Patients as Partners EU and US speakers including Marc Boutin, National Health Council, Tony Hoos, Amgen EU, Andrew Garvey, GSK, Jan Geissler, EUPATI, Veronica Todaro, Parkinson’s Disease Foundation, Roslyn Schneider, Pfizer and Sarah Krüg, Cancer 101, collaborated on an inaugural white paper focusing on culture and process change as a priority for patient engagement.

    Patient Focused Medicine’s Development (PFMD) published the white paper this week in the peer reviewed journal Therapeutic Innovation & Regulatory Science (TIRS).

    The authors of the white paper are lead advisors to both Patients as Partners programs and will be participating in case studies and panel sessions at Patients as Partners Europe taking place February 6-7, 2017 in London and Patients as Partners US taking place March 2-3, 2017 in Philadelphia.

    Read the white paper here.

    For more information on Patients as Partners Europe, click here.

    For more information on Patients as Partners US, click here.

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  • August 23, 2016

  • Pfizer’s “Blue Sky” Team Featured on PharmaTalkRadio

    Members of Pfizer’s “Blue Sky” team join DPharm’s Director, Valerie Bowling and Clinical Leader’s Chief Editor, Ed Miseta on PharmaTalkRadio to discuss the work they are doing to transform clinical research in Parkinson’s disease and patient-centric innovation. Together they discuss the vision, goals and journey in taking a new approach to advancing drug development. More […]

    Members of Pfizer’s “Blue Sky” team join DPharm’s Director, Valerie Bowling and Clinical Leader’s Chief Editor, Ed Miseta on PharmaTalkRadio to discuss the work they are doing to transform clinical research in Parkinson’s disease and patient-centric innovation. Together they discuss the vision, goals and journey in taking a new approach to advancing drug development.

    Screen Shot 2016-08-23 at 6.41.46 PMMore specifically, the Blue Sky team talks about their partnership with IBM, the first of its kind research collaboration, decisions on how to use a device in a trial, real time data collection, an 1800s house for a 21st Century research and more.

    Pfizer’s Blue Sky Guests:

    Stephen Amato, PhD, Project Manager, BlueSky, Pfizer

    David Caouette, MBA, Senior Director, Strategy and Operations Lead, BlueSky and Quantitative Medicine, Pfizer

    Daniel Karlin, MD, Senior Director, Quantitative Medicine, Clinical Lead, BlueSky, Pfizer

    Both Drs David Caouette and Daniel Karlin are co-presenting at the DPharm conference on September 20th in Boston. For more information go to www.theconferenceforum.org.

    Click here to hear the radio program: http://www.blogtalkradio.com/pharmatalk/2016/08/10/pfizers-blue-sky-approach-to-help-transform-clinical-research-1

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  • May 31, 2016

  • Patients as Partners Attendee Julie Walters on Putting the Patient First

    Julie Walters discusses the Patients as Partners Event. Originally published on LinkedIn. Putting the patient first: Time to stop talking & start doing It’s rare that you find yourself in the right place, at the right time, with the right people. But it happened last month. I was part of a small but determined group […]

    Julie Walters discusses the Patients as Partners Event. Originally published on LinkedIn.

    Putting the patient first: Time to stop talking & start doing

    Julie Walters

    Julie Walters

    It’s rare that you find yourself in the right place, at the right time, with the right people. But it happened last month.

    I was part of a small but determined group of people in Philadelphia ready to mount the pharma barricades and, in our view, talk sense.

    The event was not just another industry conference. This one was called Patients as Partners and, now in its third year, it meant business.

    The pharmaceutical industry doesn’t mean to be inhumane, but sometimes it just is. Regulations have tied good people so much in knots so that the following happens:

    • No outcomes shared from clinical trials, even to those who helped to run the trial. It’s like taking part in a marathon and being told you couldn’t know your finish time
    • No thank you’s to the real people who took the time and considerable energy to take part and try new medicines in development
    • No personal data shared of sometimes invasive procedures like MRIs and xrays. It’s like your data became someone else’s property at the doctor’s door

    It’s nonsense, but how do we change such bad, ingrained habits? Like anything in the world, change takes a small but committed group of people.


    As one person put it so simply and clearly:
    How would you like your mother to be treated if she took part in a clinical trial?


    Someone saying thank you at the end of the process would seem a good start.

    Trailblazers are starting to make a difference: patient data delivered in real time to those who took part even while a trial is still ongoing. Yes it is possible! Not easy, but possible. Families affected by a condition in the same room as those developing new treatments so they can learn from each other. The lawyers are not comfortable but again it can be done. It has got to be better than observing patients talking about living with their condition from behind a two-way mirror. Not so much patients as partners; more patients as criminals.

    The industry’s behaviour is motivated by fear; fear of getting it wrong, fear of going too far, fear of being accused of trying to sell a family a drug years before it’s even been tested (yes really!) and fear of their career coming to an abrupt stop.

    I understand how it’s come about but this fear-based approach is no longer fit for purpose in a world that now has the technology to truly share experience and knowledge.

    So if your colleague attended #Patients2016, ask how you can help & wish them luck. We’ll need it.

    Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead

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  • April 12, 2016

  • Conference Forum Speaker, Ken Getz quoted in WSJ on the Challenges of Patient Recruitment

    Conference Forum Speaker, Ken Getz, Tufts CSDD quoted in the Wall Street Journal article on the challenges of patient recruitment and the longstanding issue of excessively expensive clinical trials. From the WSJ: Researchers conduct clinical trials to test new drugs and medical treatments, but the rate at which they are able to recruit and retain […]

    Conference Forum Speaker, Ken Getz, Tufts CSDD quoted in the Wall Street Journal article on the challenges of patient recruitment and the longstanding issue of excessively expensive clinical trials.

    Jamie Macdonald and Kenneth Getz at Patients

    Jamie Macdonald, INC Research (Left) with Kenneth Getz, Tufts CSDD (Right) at the Patients as Partners in Clinical Research Conference

    From the WSJ:

    Researchers conduct clinical trials to test new drugs and medical treatments, but the rate at which they are able to recruit and retain patients is at an all-time low.

    Studies indicate that fewer than 10% of Americans participate in clinical trials, and only 3% to 5% of patients sign up for trials of new cancer therapies. Patients often aren’t aware that trials are an option, and their doctors may not suggest them.

    Some patients mistrust the research process and fear being a guinea pig, but for patients who do want to volunteer, complicated protocols and eligibility requirements can be discouraging. About 40% of clinical trials don’t recruit enough patients to meet their goals.

    “The challenges of identifying, recruiting and retaining volunteers for clinical trials drive up the direct and indirect costs of drug development and significantly delay the introduction of new medical interventions,” says Ken Getz, an associate professor at Tufts University School of Medicine’s Center for the Study of Drug Development and board chair of the nonprofit Center for Information & Study on Clinical Research Participation.

    Read the rest of the article here: http://www.wsj.com/articles/clinical-trials-need-more-subjects-1460407076

    Ken will be speaking at the upcoming Chef Medical Officer Summit East (May 11-12, 2016, Boston).

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  • April 11, 2016

  • Patients as Partners Speaker Melissa Hogan Writes Song About Son’s Battle With Rare Disease and Named Finalist in Global Songwriting Competition

    Congratulations to Patients as Partners speaker Melissa Hogan on being selected as a finalist in the International Songwriting Competition’s country category for the song she wrote titled “Alive”, which focuses on her son’s battle with the rare disease, Hunter’s Syndrome. Melissa spoke at the 3rd annual Patients as Partners held March 2016 in Philadelphia where […]

    Melissa HoganCongratulations to Patients as Partners speaker Melissa Hogan on being selected as a finalist in the International Songwriting Competition’s country category for the song she wrote titled “Alive”, which focuses on her son’s battle with the rare disease, Hunter’s Syndrome.

    Melissa spoke at the 3rd annual Patients as Partners held March 2016 in Philadelphia where she shared her son’s story along with caregiver perspectives on what influences patients to consider clinical trial enrollment.

     

    Watch the “Alive”: Lyric Video

     

    Read the full press release:

    LOCAL MOM WRITES SONG ABOUT SON’S BATTLE WITH RARE DISEASE AND IS NAMED FINALIST IN GLOBAL SONGWRITING COMPETITION 

    “Alive” Focuses on Son’s Fight Against Hunter Syndrome

    NASHVILLE, Tennessee – A debut songwriting effort, written by a mother about her son and titled “Alive,” was selected as a finalist in the International Songwriting Competition (ISC)’s country category. The song is also up for the People’s Voice award, voted on by the public until April 15.

    indexCo-written with acclaimed songwriter Mark Irwin, known for Grammy nominated “Highway Don’t Care” and other number one hits, and performed by Doug Stokes, “Alive” shares mother Melissa Hogan’s fight to save her son Case from the progressive and terminal Hunter Syndrome (also known as MPS II). It shares her son’s dream of growing up, not to be a firefighter or a football star, like many children, but just to be alive: “I want to live my life, grow into a man / I want to watch my mom grow old and hold her hand / I want to be alive.” It shares a dream that most parents take for granted.

    The ISC competition took notice of the classic vocal and acoustic guitar single, first naming it a semi-finalist earlier this month, then announcing it as a finalist. It is a song of both sorrow and hope, reflecting Hogan’s reaction to his diagnosis at two years old and then efforts to find a cure for his disease. A lyric music video for “Alive” was also released today on YouTube, accompanying the announcement of the song’s finalist status.

    Not only a songwriter, Hogan is a former practicing attorney who also runs a foundation named after her son, Saving Case & Friends. The organization funds research to cure Hunter Syndrome, which affects approximately 2,000 children worldwide and typically results in loss of physical and cognitive skills and death by early teens. She notes, “Whether it’s running our foundation, blogging, or writing music, it all comes from the same place – my love for my son and hope for his future.” Hogan blogs for various news outlets – like The Huffington Post and disability-focused website The Mighty – about topics such as rare diseases and parenting a child with special needs.

    Her creativity is on display not only in her songwriting and blogging, but also in her award-winning video production efforts for her foundation. Last year, she wrote and produced a video called Project Alive that recently received a Telly Award in the online commercial category. The video itself is a tearjerker and caught the attention of the public and celebrities alike. Actor and musician Jared Leto, Seattle Seahawks coach Pete Carroll, and financial guru Dave Ramsey, among other celebrities, all filmed videos about what they wanted to be as children, urging support for and sharing Project Alive’s efforts.

    The public can listen to and vote for “Alive” at http://bit.ly/votealive and can watch the Project Alive video, as well as the song’s lyric music video, at ProjectAlive.org.

    savingcase

    PatientsAsPartnersLogo

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  • April 7, 2016

  • Pfizer’s Craig Lipset and Medical Campaigner, Alexander Masters on Pharma Talk Radio Discussing an Alternative Funding Model for Rare Disease

    An Alternative Model to Transform a Funding Gap in Rare Disease Clinical Research Frustrated that a promising therapy for a rare cancer was sitting in a freezer due to the lack of a relatively modest amount of funding, author Alexander Masters helped lead a campaign to crowd-fund a clinical trial: the result, iCancer.org.uk. The money […]

    An Alternative Model to Transform a Funding Gap in Rare Disease Clinical Research

    Frustrated that a promising therapy for a rare cancer was sitting in a freezer due to the lack of a relatively modest amount of funding, author Alexander Masters helped lead a campaign to crowd-fund a clinical trial: the result, iCancer.org.uk. The money required was indeed raised – by one wealthy individual primarily, in return for being in the trial.

    Photo Mark Earthy www.earthyphotography.co.uk This image is protected by Copyright

    Craig Lipset interviewing Alexander Masters and Dr Magnus Essand at DPharm Europe

    At DPharm Europe, Pfizer’s Craig Lipset interviewed on stage Alexander Masters to share his innovative story. We are delighted to share the journey and the latest updates on PharmaTalk Radio. In this disruptive discussion, we address:

    • The remarkable story of the formation of iCancer.org.uk and the Oncolytic Virus Fund
    • An alternative way to make clinical trials more accessible
    • Ethical and moral issues
    • A possible disruptive and sustainable business model for other neglected medicines

    Listen to the show here.

    The next DPharm: Disruptive Innovations to Advance Clinical Trials event takes place September 20-21 in Boston. The DPharm Europe event is scheduled for early February 8-9, 2017 in London. For more information about these events or our Immuno-Oncology events (IO 360° and Rational Combinations 360°), visit www.theconferenceforum.org.

    Guest Host:
    Craig Lipset, MBA, Head of Clinical Innovation, R&D, Pfizer

    Guest:

    Alexander Masters, Author, Campaigner and Co-Founder, iCancer.org.uk

    Producer:
    Valerie Bowling, Executive Director, Conference Forum & Pharma Talk Radio

    Telegraph Article Referenced by Craig During the Program: It’s time to sell tickets for places on life-saving medical trials
    http://www.telegraph.co.uk/science/2016/04/05/its-time-to-sell-tickets-for-places-on-life-saving-medical-trial/

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  • April 4, 2016

  • PharmaTalkRadio Covers A New Economic Solution to Drive Cures to Patients

    PharmaTalkRadio features a radio discussion on a new model to repurpose drugs in unsolved diseases. Generic drugs can be repurposed to create effective treatments in unsolved diseases. However, there is no economic incentive for industry to pay for a clinical validation and regulatory approval process for most generic drug repurposing because it will not achieve […]

    PharmaTalkRadio features a radio discussion on a new model to repurpose drugs in unsolved diseases.

    Generic drugs can be repurposed to create effective treatments in unsolved diseases. However, there is no economic incentive for industry to pay for a clinical validation and regulatory approval process for most generic drug repurposing because it will not achieve the necessary ROI.

     Bruce Bloom, Cures Within Reach presenting at Dpharm Europe 2016

    Bruce Bloom, Cures Within Reach presenting at Dpharm Europe 2016

    Cures Within Reach, FindaCure, Numbers For Good and the National Health Service in England are working together to the create a new economic solution to this problem by piloting the first ever Rare Disease Generic Drug Repurposing Social Impact Bond (SIB).

    This SIB would be a “pay for success” initiative, in which investors fund the proof of concept repurposing clinical trials and the government provides a payment to the SIB for any repurposed therapies that both improve patient outcomes and reduce healthcare costs. The government success payment would allow the SIB to repay the investors, and have additional funds for the next group of repurposing clinical trials, creating a sustainable funding source for generic drug repurposing.

    Producer:
    Valerie Bowling
, Executive Director, Conference Forum

    Guest Host:
    Bruce Bloom, JD, 
President & CSO, Cures Within Reach

    Panelists:
    James Potter, 
Investment Director, Numbers for Good
    Flóra Raffai
, Executive Director, Findacure
    Dr Rick Thompson
, Scientific Officer, Findacure

    Listen to the show here: http://www.blogtalkradio.com/pharmatalk/2016/04/01/a-new-economic-solution-to-drive-cures-to-patients

     

    Bruce Bloom led panels at both the Dpharm, Disruptive Innovations to Advance Clinical Trials conferences in Europe as well as in the US. Our next DPharm event will take place September 20-21 in Boston. For more information about other radio programs and the next DPharm event, please visit www.theconferenceforum.org.

    Helpful Websites:
    findacure.org.uk
    numbersforgood.com

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  • January 25, 2016

  • Partnering with Patients in the Development & Lifecycle of Medicines

    Pharmatalk’s Valerie Bowling welcomes Anton (Tony) Hoos, MD, Head of Medical, Amgen Europe and Marc Boutin, JD, Chief Executive Officer, National Health Council. The topic of the show is inspired by a 2015 DIA published paper by a similar name, Partnering with Patients in the Development and Lifecycle of Medicines: A Call for Action. Dr […]

    Pharmatalk’s Valerie Bowling welcomes Anton (Tony) Hoos, MD, Head of Medical, Amgen Europe and Marc Boutin, JD, Chief Executive Officer, National Health Council.

    The topic of the show is inspired by a 2015 DIA published paper by a similar name, Partnering with Patients in the Development and Lifecycle of Medicines: A Call for Action. Dr Hoos and Mr Boutin are contributing authors to this paper.

    They address how industry and patients can work together to incorporate the patient voice in drug development and to improve patient’s experience in clinical trials. They examine the current challenges and barriers to patient involvement, progress and next steps.

    Anton& marc

    Left: Anton Hoos, MD Right: Marc Boutin, JD

    Both Dr Hoos and Mr Boutin will be speaking at the Patients as Partners conference scheduled for March 14-15, 2016 in Philadelphia. For more information, click here.

    To hear the show, click here

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  • January 11, 2016

  • Top 10 Medical Research Issues and Trends to Watch in 2016

    Conference Forum speaker and Executive Director of FasterCures, Margaret Anderson released FasterCure’s recommendations on the Top 10 Medical Research Issues and Trends to Watch in 2016. Patient engagement is listed as the number one priority on their top 10 list. They talk about the importance of patient input on R&D and how patient involvement needs […]

    MargaretAndreson(1)

    Margaret Anderson at the R&D Leadership Summit 2015

    Conference Forum speaker and Executive Director of FasterCures, Margaret Anderson released FasterCure’s recommendations on the Top 10 Medical Research Issues and Trends to Watch in 2016.

    Patient engagement is listed as the number one priority on their top 10 list. They talk about the importance of patient input on R&D and how patient involvement needs to become a discipline that is scalable and actionable.

    The 3rd Annual Patients as Partners program hosted by The Conference Forum plans on showcasing how the discussion around patient involvement/engagement can be turned into action by providing tangible strategies. Additionally, the program addresses many of the issues and trends that FasterCures identifies in their survey including value frameworks, drug pricing, FDA perspectives, amongst many others. Margaret Anderson will be moderating a panel at the event on the topic of value, coverage and reimbursement.

    Abstract:

    AAEAAQAAAAAAAATXAAAAJDA3OWE0MmU4LWExZjEtNGEyMS04ZGMzLTU5ZmNkYWFlNzZjMQAdvances in scientific discovery are converging with unparalleled policy and regulatory action for medical research. At FasterCures, we have surveyed the landscape and interviewed subject matter experts to come up with our recommendations of the top 10 issues to keep an eye on in 2016:

     

     

    1. Patient engagement: Put a ring on it (with apologies to Beyoncé)
    Patient engagement was the “hot date” of 2015, and it’s about time, right? Now, 2016 must be about turning it into a lasting commitment before the passion fades. Anecdotal evidence is building about the positive impact of patient input on R&D efficiency and effectiveness, but this needs to become a discipline that is scalable and actionable. Methods for collecting and applying patient perspective data must be created and consensus built around them. Skills and capacities need to be built in organizations, from industry to patient groups to regulators and, yes, even payers. Concerns about conflict-of-interest must be addressed. The U.S. Food and Drug Administration (FDA) is leading the way by offering guidance on incorporating patient preferences into clinical trial designs and using those data to inform approval decisions; its new Patient Engagement Advisory Committee will convene in 2016.

    Read the full article here: http://snip.ly/S8NL

    For more information about the 3rd Annual Patients as Partners conference visit: http://theconferenceforum.org/conferences/patients-as-partners/overview/

    *Patients as Partners is a PatientsIncluded.org accredited event.

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  • December 21, 2015

  • CISCRP Names Patients as Partners Speaker Kyle Bryant a Medical Hero

    “There’s a chance that these drugs could be therapeutic for me, but that’s not why I participate. I participate because I want to push the science forward. There is no way to get these trials done without participants. Even if these drugs aren’t helpful for me now, it will help find something in the future.” […]

    There’s a chance that these drugs could be therapeutic for me, but that’s not why I participate. I participate because I want to push the science forward. There is no way to get these trials done without participants. Even if these drugs aren’t helpful for me now, it will help find something in the future.”

    – Kyle Bryant, rideATAXIA

    Patients as Partners speaker Kyle Bryant was diagnosed at the age of 17 with Friedreich’s Ataxia (FA), a rare, progressive neuromuscular disorder. He was told there is no treatment or cure and so turned to cycling as a means of therapy and fundraising opportunity to further research in this rare disease space. Kyle’s participation in clinical trials gives him hope in that he can help not only himself, but future developments aimed at finding a potential cure for the disease. Kyle will be sharing his story at the 3rd Annual Patients as Partners program in March in Philadelphia.

    Abstract: Getting the Wheels Turning for a Cure

    When Kyle Bryant was diagnosed with Friedreich’s Ataxia (FA), a rare, progressive neuromuscular disorder, at age 17, he knew he had to do something, so he did the thing he knew best: he got on his bike.

    He spent the first few years after his diagnosis challenging himself to achieve new personal records in cycling, both as a way of coping and proving to himself that he could still do what he put his mind to.

    kylebryant

    Photo Credit: Blake Andrews, SLOtography.com

     

    By the time he was 26, after riding from San Diego, CA to Memphis, TN, Kyle’s passion became so much more. That’s when the idea for rideATAXIA, a program of the Friedreich’s Ataxia Research Alliance (FARA), got wheels of its own. Kyle began organizing rides to fund FA research for his organization that now has locations in five states and plans rides across the country.

    Hearing there’s no treatment or cure was a huge blow, so cycling and fundraising became our therapy— how we dealt with the disease and continue to deal with it,” Kyle says. And even though Kyle had to trade in his standard bike for a more handicap-accessible Catrike 700 model, it hasn’t slowed him down.

    To read more about Kyle Bryant’s remarkable story visit: http://snip.ly/e1eA

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  • December 8, 2015

  • Making Clinical Trials a Care Option for Patients on PharmaTalk Radio

    At Dpharm US 2015, Katherine Vandebelt, Global Head, Clinical Innovation, Eli Lilly hosted a talk show on Making Clinical Trials a Care Option for Patients to fantastic reviews. Dpharm Director, Valerie Bowling, welcomes Katherine as she hosts a similar session on Pharma Talk Radio. Katherine (Kathy) discusses how an organized multispecialty healthcare system, clinical research […]

    Katherine

    Katherine Vandebelt, Global Head, Clinical Innovation, Eli Lilly at DPharm US

    At Dpharm US 2015, Katherine Vandebelt, Global Head, Clinical Innovation, Eli Lilly hosted a talk show on Making Clinical Trials a Care Option for Patients to fantastic reviews. Dpharm Director, Valerie Bowling, welcomes Katherine as she hosts a similar session on Pharma Talk Radio. Katherine (Kathy) discusses how an organized multispecialty healthcare system, clinical research site network and pharma company used clinical research as a tool and connector to help improve patient engagement in their overall healthcare management and compliance.

    More specifically:

    – Healthcare System: improving health and service to patients and advocators of clinical research participation

    – Clinical Research Site Network: bringing the right patients to the right trials with increased quality of data and engagement of patients

    – Pharma: expanding our reach to patients and getting trials done faster

    – Shifting the paradigm: Applying a Value Based Health Care Delivery Framework to improve outcomes and reduce healthcare costs

    Panelists

    Panelists at DPharm US

    Radio Show Participants:

    – Host: Katherine Vandebelt, Global Head, Clinical Innovation, Eli Lilly and Company

    – Jeff James, MBA, CEO, Wilmington Health

    – Jennifer Byrne, CEO, PMG Research

    – Allen Buechler, MBA, Advisor, Strategy and Operations, Eli Lilly and Company

    – Toyin Okanlawon, MD, MPH, Senior Health Care Researcher, Harvard Business School Health Care Team


    Click Here to Listen to the Show


     

    Upcoming Clinical Research/Trial Conferences:

    DPharm Europe Logo NewDpharm: Disruptive Clinical Trials Europe, February 9-10, 2016, London, UK

    PatientsAsPartnersLogoPatients as Partners, March 14-15, 2016, Philadelphia, PA

    Collaborations logo 210 x 62 new
    Clinical Trial Collaborations, March 21-22, 2016, Boston, MA

    For information, visit www.theconferenceforum.org

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  • December 7, 2015

  • Conference Forum Speaker Dr. Edith Perez on The People Behind the Data

    Conference Forum speaker Dr. Edith Perez, VP and Head of BioOncology, US Medical Affairs for Genentech recently wrote a blog piece that discusses the value of patients and how their involvement in clinical trials can help further research and development. “The people behind the data – they are the true heroes helping us find the […]

    Conference Forum speaker Dr. Edith Perez, VP and Head of BioOncology, US Medical Affairs for Genentech recently wrote a blog piece that discusses the value of patients and how their involvement in clinical trials can help further research and development.

    Edith_Perez-1

    Dr. Edith Perez at Immuno-Oncology 360°


    The p
    eople behind the data – they are the true heroes helping us find the next cancer breakthrough.”

    – Edith Perez, MD, Genentech

    Dr. Perez joined us last year at our inaugural Immuno-Oncology 360° program to discuss clinical trial design and management for cancer immunotherapies.

    At that program, we featured a patient, Jamie Goldfarb, who had stage 4 melanoma and is now cancer free as a result of participating in an immunotherapy clinical trial. Jamie Goldfarb is now a patient advocate and helps provide a patient’s insight in clinical development and trial design. Jaime will be joining us this year for our 3rd Annual Patients as Partners Conference.

    This correlates to Dr. Perez’ position on patient involvement in her recent post.

    Abstract: In my work in oncology over the past 25 years, I’ve had the privilege of being involved in both research and patient care. These two fields use strikingly different approaches to achieve the same overarching goal—fighting cancer. Research is a tedious process. First, we start in the lab. We test, we tweak, and sometimes we fail before moving forward. Patient care is just the opposite. There is no room for testing or trial and error. When peoples’ lives are at risk, we do everything we can to treat the disease quickly based on what we know and make it go away.

    But ultimately, research advances do not exist without people.

    Read the full blog here: snip.ly/xIkb

    By means of our 3rd Annual Patients as Partners program, we too are helping to provide an outlet to ensure that patients are having a hand in helping drive clinical development and outcomes along with improving their experiences in clinical trials. We are working with patients, advocates, industry, regulatory amongst many others to share strategies to increase patient involvement across the clinical development continuum.

    To learn more about the 3rd Annual Patients as Partners conference visit: http://theconferenceforum.org/conferences/patients-as-partners/overview/

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  • December 3, 2015

  • Newly Formed Patient Advocacy Coalition to Tackle Pressing Healthcare Issues to Give Patients Access to Affordable, Patient-Centered Care

    Breaking news was announced December 3rd about a new patient advocacy coalition called “Partners for Better Care (PBC)” that was formed to address health care issues and improve patient care. Additionally, while the coalition’s goal is to improve health care for all Americans, each member organization is also seeking to improve the health care system […]

    Breaking news was announced December 3rd about a new patient advocacy coalition called “Partners for Better Care (PBC)” that was formed to address health care issues and improve patient care. Additionally, while the coalition’s goal is to improve health care for all Americans, each member organization is also seeking to improve the health care system for patient groups they represent as advocates.

    PatientsAsPartnersLogoWe are extremely excited to see that there are so many initiatives being taken to really put patients first. Our goal, along with many others, is to provide an outlet to ensure that patients are having a hand in helping drive clinical development and outcomes along with improving their experiences in clinical trials. This article compliments our 3rd Annual Patients as Partners program where we work with patients, advocates, industry, regulatory amongst many others to share strategies to increase patient involvement across the clinical development continuum.

    Abstract: (Washington, D.C.) – Patient advocacy groups announced today the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 million patients who seek to advance a common goal: better health care for all Americans.

    “High quality medical care is available in the United States, but many Americans are unable to access the care they need,” said Mary Richards, Executive Director of Partners for Better Care. “Access to affordable, patient-centered care is critical.”

    Screen Shot 2015-12-03 at 10.29.32 AM

    SOURCE: Partners for Better Care Website

     

    Statistics show that for most Americans, affordable, patient-centered care remains out of reach. Among insured adults in 2014, 20 million had a medical problem and did not visit a doctor or clinic, 12 million did not get needed specialist care, and nearly half of middle class workers skipped healthcare services or fell into financial hardship because of health expenses. [Commonwealth Fund, January 2015]

    Seeking to improve health care in the U.S., PBC’s inaugural members—AIDS United, American Liver Foundation, Amputee Coalition, the Christopher & Dana Reeve Foundation, Hemophilia Federation of America, The MAGIC Foundation, National MS Society, Parkinson’s Action Network and United Cerebral Palsy—all bring to the initiative strong and effective patient advocacy leadership.

    Read the full release here: http://snip.ly/HotS

    To learn more about Partners for Better Care visit: http://partnersforbettercare.org/about/

    To learn more about the 3rd Annual Patients as Partners conference visit: http://theconferenceforum.org/conferences/patients-as-partners/overview/

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  • December 2, 2015

  • Clinical Trial Patient Speaks out in New York Times

    Although Stan Collender’s NYT’s Op-Ed contribution was published on June 19, 2015, we want to bring it more attention as his voice is so important in helping bridge the gap between really sick patients and clinical trials. From the New York Times: I HAVE a very rare and aggressive type of skin cancer — Merkel […]

    Although Stan Collender’s NYT’s Op-Ed contribution was published on June 19, 2015, we want to bring it more attention as his voice is so important in helping bridge the gap between really sick patients and clinical trials.

    From the New York Times:

    19Collender-master675-v2

    Image by Marty Blake

    I HAVE a very rare and aggressive type of skin cancer — Merkel cell carcinoma — for which there is no approved cure, and I’m participating in a clinical trial to deal with it. If successful, the trial will show that the drug I’m being given at least manages what is now an often fatal disease.

    Unfortunately, participation in clinical trials by cancer patients is, like my disease, extremely rare. Only roughly 3 percent of all cancer patients in the United States ever agree to join a trial. Among women and many minorities, the participation rates are even lower.

    This is not a (excuse the term) benign problem. Clinical trials are the way promising new drugs are tested and progress against cancer is made. The paucity of participants also significantly increases the time it takes for new medications and treatments to be approved because the trials take so much longer to complete. And that means that many people who would benefit from these drugs won’t get them in time.

    Continue Reading:

    http://www.nytimes.com/2015/06/19/opinion/clinical-trials-need-cancer-patients.html?_r=0

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  • November 18, 2015

  • Lori Abrams, BMS on Diversity in Clinical Trials

    The purpose of medicines is to improve patients’ lives. Despite the increasing number and scope of patient involvement initiatives there are still challenges, such as diversity in clinical trials, that need to be addressed. Lori Abrams, Director of Patient Advocacy for Bristol Myers-Squibb shares her thoughts on the challenges with diversity in clinical trials and […]

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    Lori Abrams speaking at Dpharm: Disrupting Clinical Trials 2015

    The purpose of medicines is to improve patients’ lives. Despite the increasing number and scope of patient involvement initiatives there are still challenges, such as diversity in clinical trials, that need to be addressed.

    Lori Abrams, Director of Patient Advocacy for Bristol Myers-Squibb shares her thoughts on the challenges with diversity in clinical trials and how to address those issues. Abrams will also be leading an in depth panel discussion on the topic at the 2nd Annual Patients as Partners program where she will be joined by the FDA, Novartis, Sanofi and the National Association of the Advancement of Colored People (NAACP).

    Q: Why is diversity in clinical trials still a challenge today?
    A: Clinical trial populations are often not reflective of the target population who will use the medicine. Other challenges include:

    • Drug safety and efficacy can vary across demographic sub-groups
    • Minorities have historically been under represented in clinical trial populations
    • Addressing the lack of diversity in clinical trial populations is an on-going challenge for sponsors
    • Access to novel treatments through involvement in clinical trials not available to many

    Q: What will you be sharing at the 3rd Annual Patients as Partners conference regarding diversity and clinical trials?
    A: I will be talking about relationships, collaboration, creative thinking and empathy as the key in developing and executing a strategic plan along with what is working well and what is not.

    Q: What do you hope attendees will walk away with after participating in your session?
    A: I hope they will continue the dialogue, have an increased awareness of the need for representative clinical trials, and identify and adopt practices known to improve the recruitment and retention of racially and ethnically diverse populations.

    For more information about the 3rd Annual Patients as Partners conference visit: http://theconferenceforum.org/conferences/patients-as-partners/overview/

    *Patients as Partners is a PatientsIncluded.org accredited event.

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  • November 16, 2015

  • 3rd Annual Patients as Partner’s Program Receives Patients Included Accreditation

    We are pleased to announce that the 3rd Annual Patients as Partners program is officially Patients Included accredited.  The mission of Patients Included is to provide conference organizers with a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are […]

    Patients Included logo 200 x 200We are pleased to announce that the 3rd Annual Patients as Partners program is officially Patients Included accredited.  The mission of Patients Included is to provide conference organizers with a means of demonstrating that their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited.

    This is exactly what the 3rd Annual Patients as Partners is all about.  The conference strives to create a shift in how industry views and works with patients. Our history with this program has also created a paradigm shift in how we do our research. Five years ago, we began researching directly with patients, obtaining their feedback, which has changed the way we produce our conferences. We have learned from patients the vital need to understand and incorporate their voices in designing clinical trials and developing clinical endpoints along with the need to improve their entire experience in clinical trials. More importantly, it taught us how we can create positive change for patients through our programs.

    For more information about the Patients as Partners Conference visit: http://theconferenceforum.org/conferences/patients-as-partners/overview/

    For more information about Patients Included visit: http://patientsincluded.org/

    PatientsAsPartnersLogo

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  • October 8, 2015

  • Purdue Pharma’s Head of Medical Research, Mitchell Katz Shares the Greatest Insight he Gained from a Conference this Year.

    Originally published on Life Science Leader What is the greatest insight you gained from attending a conference this year? We attended the patients as partners in clinical trials conference in March 2015. Presentations discussed specific examples not only of how patient-oriented approaches could be used to promote clinical trial enrollment and retention, but also of […]

    Originally published on Life Science Leader

    What is the greatest insight you gained from attending a conference this year?

    Mitch Katz PhotoWe attended the patients as partners in clinical trials conference in March 2015. Presentations discussed specific examples not only of how patient-oriented approaches could be used to promote clinical trial enrollment and retention, but also of how such programs were being used to refine overall approaches to studying and treating disease so as to provide more meaningful results to patients. We brought back and were able to incorporate specific approaches to gathering and utilizing patient feedback about the scientific and logistical aspects of Purdue’s protocols, as well as an understanding of key success factors for such programs.

    For more information about the Patients as Partners Conference visit: http://theconferenceforum.org/conferences/patients-as-partners/overview/

    View the original here: http://www.lifescienceleader.com/doc/what-is-the-greatest-insight-you-gained-from-attending-a-conference-this-year-0001

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  • May 6, 2015

  • Best Article on Partnering with Patients Authored by our Distinguished Speakers

    One of the best articles on partnering with patients in clinical research published. Lode Dewulf, MD, Roslyn Schneider, MD and Veronica Todaro, MPH, featured speakers at the Patients as Partners conference were among the authors who collaborated to make this article a reality. Congratulations to all. Abstract: The purpose of medicines is to improve patients’ […]

    One of the best articles on partnering with patients in clinical research published. Lode Dewulf, MD, Roslyn Schneider, MD and Veronica Todaro, MPH, featured speakers at the Patients as Partners conference were among the authors who collaborated to make this article a reality. Congratulations to all.

    Veronica Todaro, VP, National Programs, Parkinson’s Disease Foundation, Anne Beal, MD, MPH, Chief Patient Officer, Sanofi, Suzanne Schrandt, JD, Deputy Director of Patient Engagement, PCORI & Lode DeWulf, VP, Patients Affairs, UCB Networking

    Veronica Todaro, VP, National Programs, Parkinson’s Disease Foundation, Anne Beal, MD, MPH, Chief Patient Officer, Sanofi, Suzanne Schrandt, JD, Deputy Director of Patient Engagement, PCORI & Lode DeWulf, VP, Patients Affairs, UCB Networking at Patients as

    Abstract:
    The purpose of medicines is to improve patients’ lives. Stakeholders involved in the development and lifecycle management of medicines agree that more effective patient involvement is needed to ensure that patient needs and priorities are identified and met. Despite the increasing number and scope of patient involvement initiatives, there is no accepted master framework for systematic patient involvement in industry-led medicines research and development, regulatory review, or market access decisions. Patient engagement is very productive in some indications, but inconsistent and fragmentary on a broader level. This often results in inefficient drug development, increasing evidence requirements, lack of patient-centered outcomes that address unmet medical needs and facilitate adherence, and consequently, lack of required therapeutic options and high costs to society and involved parties.

    Roslyn Schneider, MD, Global Patient Affairs Lead, Pfizer Medical, Pfizer & Sarah Krüg, CEO / Executive Director, CANCER101 / Society for Participatory Medicine

    Roslyn Schneider, MD, Global Patient Affairs Lead, Pfizer Medical, Pfizer & Sarah Krüg, CEO / Executive Director, CANCER101 / Society for Participatory Medicine at Patients as Partners 2015

    Improved patient involvement can drive the development of innovative medicines that deliver more relevant and impactful patient outcomes and make medicine development faster, more efficient, and more productive. It can lead to better prioritization of early research; improved resource allocation; improved trial protocol designs that better reflect patient needs; and, by addressing potential barriers to patient participation, enhanced recruitment and retention. It may also improve trial conduct and lead to more focused, economically viable clinical trials. At launch and beyond, systematic patient involvement can also improve the ongoing benefit-risk assessment, ensure that public funds prioritize medicines of value to patients, and further the development of the medicine. Progress toward a universal framework for patient involvement requires a joint, precompetitive, and international approach by all stakeholders, working in true partnership to consolidate outputs from existing initiatives, identify gaps, and develop a comprehensive framework. It is essential that all stakeholders participate to drive adoption and implementation of the framework and to ensure that patients and their needs are embedded at the heart of medicines development and lifecycle management.

    Read the paper here: https://drive.google.com/file/d/0B8lnRTWVokG-cGtBLUxseEVUNkU/view?usp=sharing

     

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  • April 2, 2015

  • Creating An Advocacy Department To Hear The Voice Of The Patient

    Conference Forum speaker and advisor Lori Abrams was recently interviewed by Ed Miseta, Chief Editor, Outsourced Pharma and Clinical Leader on creating an advocacy department for BMS: Excerpt from Clinical Leader: When Lori Abrams was selected to be the head of advocacy, diversity and patient engagement for Global Development Operations at BMS, she took over […]

    Conference Forum speaker and advisor Lori Abrams was recently interviewed by Ed Miseta, Chief Editor, Outsourced Pharma and Clinical Leader on creating an advocacy department for BMS:

    Excerpt from Clinical Leader:

    When Lori Abrams was selected to be the head of advocacy, diversity and patient engagement for Global Development Operations at BMS, she took over a department that did not exist. She had to build the department and recruit personnel to form a group that would ensure the voice of the patient is included in the design and execution of trials. Abrams agreed to speak with me about some of the lessons she has learned.

    Miseta: Tell us something that someone not involved with patient advocacy might be surprised to learn?

    Lori Abrams: When given the opportunity, many patients and/or their caregivers are highly motivated to help us learn about their disease, life challenges and journey.  They are willing to share very personal stories that illustrate their day-to-day fears, obstacles and dreams.  They understand and even demand that we design and execute a clinical trial that is more patient-friendly with their cooperation.

    Continue reading here: http://www.clinicalleader.com/doc/creating-an-advocacy-department-to-hear-the-voice-of-the-patient-0001?sthash.PWyjbhRl.mjjo

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  • March 30, 2015

  • Patient Voice: The Key To Clinical Trial Success

    Ed Miseta, Chief Editor, Outsourced Pharma and Clinical Leader reviews Patients as Partners 2015. Last year when Valerie Bowling kicked off the inaugural Patients as Partners conference, she did so in the midst of a snowstorm. That unfortunately cut down on the number of attendees to a conference that covers a topic about which she is […]

    Ed Miseta, Chief Editor, Outsourced Pharma and Clinical Leader reviews Patients as Partners 2015.

    Last year when Valerie Bowling kicked off the inaugural Patients as Partners conference, she did so in the midst of a snowstorm. That unfortunately cut down on the number of attendees to a conference that covers a topic about which she is very passionate. Fortunately, the weather cooperated this year and attendees at the March event in Philadelphia were treated to one speaker after another, from both pharma as well as advocacy groups, extolling the virtues of adding patient voice to the trial design process. Click here to continue the article. http://goo.gl/fVRsU5

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  • March 16, 2015

  • Conference Forum joins CISCRP at Medical Heroes Dinner

    Philadelphia, PA, March 15th, the Conference Forum attended CISCRP’s launch dinner to raise awareness for medical heroes in clinical research. The dinner was held at the Yards Brewing Company where we got to mingle over ales made from the same recipes from the American revolution and in particular founding father and fellow brewer, Thomas Jefferson. After […]

    Philadelphia, PA, March 15th, the Conference Forum attended CISCRP’s launch dinner to raise awareness for medical heroes in clinical research. The dinner was held at the Yards Brewing Company where we got to mingle over ales made from the same recipes from the American revolution and in particular founding father and fellow brewer, Thomas Jefferson. After dinner, we toured the brewery. INC Research, Trial Reach, ePharma Solutions, Art Craft, the Parkinson’s Foundation and Pharma reps attended and what made the evening especially fun besides the excellent networking was toasting with our British guests!

    CISCRPdinner

    Jessica Rothenberg, Meredith Sands and Valerie Bowling together with CISCRP and industry guests at the Yards Brewing Company, Philadelphia, PA

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  • March 13, 2015

  • Patients As Partners in the News!

    Nature’s March 5th article “Training on trials: Patients taught the language of drug development” explores the relationship between industry and patients.  Ken Getz, co-chair of the Patients As Partners Event (March 16-17, 2015) spoke with nature about what opportunities are available for patients in the US. Nature excerpt below: Private organizations are increasingly extending invitations to […]

    Nature’s March 5th article “Training on trials: Patients taught the language of drug development” explores the relationship between industry and patients.  Ken Getz, co-chair of the Patients As Partners Event (March 16-17, 2015) spoke with nature about what opportunities are available for patients in the US. Nature excerpt below:

    Private organizations are increasingly extending invitations to patient advocacy groups and patients where they can spend two to three days with members of the organization and learn about what they’re doing as far as drug development and clinical testing are concerned. As one example, he points to the Drug Information Association, based in Washington, DC, which serves as a forum through which professionals involved in the drug development process can engage with patients and patient advocates.

    “In a time when the industry was performing well, there wasn’t an incentive to do something new,” adds Getz. “Now they really have to figure out new ways to do R&D.” And those new ways might mean speaking with patients about their experiences being in clinical trials or having trouble accessing drugs. Getz is chairman of the Patients as Partners conference, an annual meeting that will be held in Philadelphia this month, which aims to bring together patient advocacy groups and industry representatives to facilitate larger involvement of patients in the clinical research arena.

    Read the rest of the article here: http://www.nature.com/nm/journal/v21/n3/full/nm0315-209.html

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  • March 2, 2015

  • 10 Best Practices to be addressed at Patients as Partners

    Patients as Partners (March 16-17, 2015) will present: Communicating the importance of a leadership role around the patient in R&D Understanding the main issues that matter most to patients Building excellent communication and relationships with the patient community to build long-term solutions towards improving healthcare Creating and executing patient engagement strategies and ensure that the […]

    Patients as Partners (March 16-17, 2015) will present:

    1. Communicating the importance of a leadership role around the patient in R&D
    2. Understanding the main issues that matter most to patients
    3. Building excellent communication and relationships with the patient community to build long-term solutions towards improving healthcare
    4. Creating and executing patient engagement strategies and ensure that the organization prioritizes these insights
    5. Helping patients find studies that are right for them
    6. Increasing patient diversity in clinical trials
    7. Incorporating the patient voice into the design of a clinical trial
    8. Forming a good industry-patient advocacy relationship should look like to benefit the patient
    9. Understanding and overseeing the ways in which pharma is perceived by and relates to patients
    10. Helping to redefine and restructure corporate drug development strategies in ways that will offer demonstrable value to patients

    For more information about the Patients as Partners event click here.

    To register click here.

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  • February 2, 2015

  • Medical Heroes Appreciation Dinner to Honor Patients in Clinical Research

    CISCRP in collaboration with the Patients as Partners Conference team are excited to launch the first Medical Heroes Appreciation Dinner to celebrate the people who participate in clinical research. Hosted by Ken Getz, Founder of CISCRP, the event takes place on March 15th at the Yards Brewing Company in Philadelphia. Proceeds from this event will […]

    CISCRP in collaboration with the Patients as Partners Conference team are excited to launch the first Medical Heroes Appreciation Dinner to celebrate the people who participate in clinical research. Hosted by Ken Getz, Founder of CISCRP, the event takes place on March 15th at the Yards Brewing Company in Philadelphia. Proceeds from this event will provide education and outreach to patients and their families.

    According to the US Census Bureau, more than half of all Americans currently takeprescription medications and most Americans report routinely using over-the-counter medications. However, the general public does not connect the medicines it consumes with the clinical research and dedication of the people who made these developments possible.

    For the general public, clinical research is not typical dinner table conversation. It’s not discussed in high school science classrooms. It’s usually only discussed in a doctor’s office when a patient is diagnosed with an illness. Yet clinical research touches every person’s life regularly.

    “We are honored to collaborate with CISCRP in recognizing medical heroes – the people who participate in clinical trials -at the first annual Medical Heroes Appreciation Dinner,”said Valerie Bowling, Executive Director of the Conference Forum.

    The dinner will take place the evening before the 2nd Annual Patients as Partners in Clinical Research conference.The dinner will include an appreciation ceremony, guided brewery tour, beer, wine and a tax-deductible donation.

    MedHeroesLogo_Revised300-1024x1024
    If you are a Medical Hero who has participated in a clinical trial and would like to attend the dinner to be honored, please email jillmcnair@ciscrp.org.

     

    PatientsAsPartnersLogoFor information about the Patients as Partners in Clinical Research conference taking place March 16-17 in Philadelphia, click here. For any questions about the program, contact service@tcfllc.org

     

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  • January 28, 2015

  • Patient Advocates: Expanding Their Role in Conducting Successful Clinical Trials

    Patient advocacy organizations have grown over the past 25 years in affecting legislative and policy issues to fight for the patient voice and rights across numerous therapeutic areas. Patient advocates have earned respect for their work in lobbying for legislation that ensures high-quality patient care, for raising millions of dollars for research, and for increasing […]

    Patient advocacy organizations have grown over the past 25 years in affecting legislative and policy issues to fight for the patient voice and rights across numerous therapeutic areas.

    Patient advocates have earned respect for their work in lobbying for legislation that ensures high-quality patient care, for raising millions of dollars for research, and for increasing awareness of clinical trials. Many advocates now have a “seat at the table” for discussions and decision-making in their healthcare communities, the FDA, leading associations and more.

    We are so pleased to bring the Patients as Partners in Clinical Research conference taking place March 16-17 in Philadelphia.  We bring together patient advocates together with pharma, FDA, PCORI, academia and more to address ideas and solutions for the following:

    • – Understanding and incorporating the patient’s voice in designing clinical trials / developing a clinical endpoint
    • – Vastly improving the patient’s entire experience in a clinical trial
    Patients 2015 Home Page Slider

    2015 Patients as Partners Keynotes

    Our keynotes include Drs Anne Beal, Chief Patient Officer, Sanofi, Lode Dewulf, VP, Patient Affairs Officer at UCB and Roslyn Schneider, Global Patient Affairs Lead at Pfizer. For more information on seeing the work patient advocates are doing to make a difference in driving successful clinical research, click here.

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  • January 5, 2015

  • Patients as Partners welcomes Dr Anne C. Beal, Chief Patient Officer, Sanofi as Keynote Speaker

    We are delighted to confirm that Dr Anne C. Beal, Chief Patient Officer at Sanofi will provide a keynote talk at Patients as Partners on March 16th in Philadelphia. Dr Anne C. Beal’s appointment as Chief Patient Officer at Sanofi, was the first for a top 10 biopharmaceutical company, showing the commitment to go further […]

    We are delighted to confirm that Dr Anne C. Beal, Chief Patient Officer at Sanofi will provide a keynote talk at Patients as Partners on March 16th in Philadelphia.

    Dr Anne C. Beal’s appointment as Chief Patient Officer at Sanofi, was the first for a top 10 biopharmaceutical company, showing the commitment to go further in meeting the needs of patients. Dr. Beal’s responsibility is to further elevate the perspective of the patient within Sanofi so the company’s future healthcare offerings can better incorporate the unique priorities and needs of patients and caregivers in a variety of Sanofi activities, ranging from early stage R&D through to on-market availability of novel healthcare solutions.

    Also keynoting at Patients as Partners is Dr Lode Dewulf, Patient Affairs Officer, UCB and Dr Roslyn Schneider, Global Patient Affairs Lead at Pfizer. They will all share the responsibility of infusing the patient perspective in big pharma.


    For more information on the Patients as Partners event visit: http://theconferenceforum.org/conferences/patients-as-partners/overview/

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  • December 5, 2014

  • ePharmaSolutions is helping patients find the right studies

    90% of patients who respond to recruitment ads never get into that study. That’s a percentage ePharmaSolutions is changing. After being turned away from a study many patients don’t know where to look for alternatives. At the Patients as Partners event, Lisa LaLuna of ePharmaSolutions and  DPharm Idol 2014 winner shares information on ReferralPlus using […]

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    Lisa & Ken at Patients 2014

    90% of patients who respond to recruitment ads never get into that study.
    That’s a percentage ePharmaSolutions is changing. After being turned away from a study many patients don’t know where to look for alternatives. At the Patients as Partners event, Lisa LaLuna of ePharmaSolutions and  DPharm Idol 2014 winner shares information on ReferralPlus using geo-therapeutic matching algorithms to help patients find studies that are right for them. Joining Lisa in the session will be Ken Getz, Director of Sponsored Research, Tufts CSDD and Founder, CISCRP.

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  • December 3, 2014

  • A Mother’s Courage Opens Patients as Partners Event!

    We are so pleased to welcome, Pat Furlong, Founding President and CEO of PPMD to the Patients as Partners event. Pat will open the program with the patient view on participating in clinical trials. Patients as Partners is dedicated to: 1. Understanding and incorporating the patient’s voice in designing clinical trials 2. Vastly improving the patient’s […]

    We are so pleased to welcome, Pat Furlong, Founding President and CEO of PPMD to the Patients as Partners event. Pat will open the program with the patient view on participating in clinical trials. Patients as Partners is dedicated to:

    1. Understanding and incorporating the patient’s voice in designing clinical trials
    2. Vastly improving the patient’s entire experience in clinical trials. The 2nd annual conference takes place March 16-17 in Philadelphia.

    Pat’s Story

    This scientific crusader has helped create paths for so many patient voices across so many disease areas. We are delighted to share Pat’s story from the PPMD website:

    Pat Furlong BW

    Pat Furlong

    When doctors diagnosed her two sons, Christopher and Patrick, with Duchenne in 1984, Pat didn’t accept “there’s no hope and little help” as an answer. Pat immersed herself in Duchenne, working to understand the pathology of the disorder, the extent of research investment and the mechanisms for optimal care. Her sons lost their battle with Duchenne in their teenage years, but she continues to fight—in their honor and for all families affected by Duchenne.

    In 1994, Pat, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure. Today, Pat continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world.

    Along with leading PPMD, Pat speaks about Duchenne and related topics at conferences each year worldwide and is an active Board member with the Genetic Alliance and the Muscular Dystrophy Coordinating Committee, U.S. Department of Health & Human Services. She is also a committee member on the Collaboration in Education and Test Translation Program; and serves on the data safety monitoring board for both the Rare Diseases Clinical Research Network and Cooperative International Neuromuscular Research Group.

    Pat graduated from Mt. St. Joseph College in Cincinnati, Ohio with a BS in Nursing. She attended Graduate School at Ohio State University. While attending Ohio State, Pat spent most of her time in the Medical Intensive Care Unit. After marrying Dr. Tom Furlong, Pat ran the Renal Dialysis Unit and Patient Education Center at Akron General Hospital. With four children, Pat continued her career on a part-time basis, teaching patient education classes at Middletown Regional Hospital.

    Pat has two daughters and her perseverance is in honor of her two sons, Christopher and Patrick, who continue to motivate her efforts.

    Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion. Duchenne is the most common fatal, genetic childhood disorder, which affects approximately 1 out of every 3,500 boys each year worldwide. It currently has no cure.

    For more information about PPMD, visit EndDuchenne.org

    For more information about the Patients as Partners event, visit www.theconferenceforum.org

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  • October 9, 2014

  • CISCRP to Launch a Museum Exhibit to Educate Kids about the Clinical Research Process

    We are so pleased to tell you that our friends at CISCRP will be launching a museum exhibit in 2015 to educate elementary through high-school aged children about the clinical research process and what it means to be a participant in clinical trials. This new exhibit is slated to travel to major science museums in […]

    We are so pleased to tell you that our friends at CISCRP will be launching a museum exhibit in 2015 to educate elementary through high-school aged children about the clinical research process and what it means to be a participant in clinical trials. This new exhibit is slated to travel to major science museums in 12 cities over a three year tour. Exhibit content will be integrated into local school curricula and it will receive significant public relations exposure raising general public awareness about clinical research.

    The exhibit content has been reviewed with a variety of stakeholders including the NIH, FDA, clinical research professionals and bioethicists. The project is now entering its final stage of development requiring substantial funding to complete production and begin its launch. Astra-Zeneca, Pfizer, INC, ACRP and ACRO are among companies that have already provided their support.

    Please email ellyngetz@ciscrp.org if you are interested in learning more about sponsoring this important traveling museum exhibit.

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  • August 11, 2014

  • Speakers Recognized by PharmaVoice100

    PharmaVOICE 100 is an annual list of individuals recognized for their positive contributions to the life-sciences industry. These people actively demonstrate what it means to think bigger and lead with passion and integrity. They are nominated by thousands of PharmaVOICE readers throughout the year. We are so pleased to see several of our speakers make […]

    PharmaVOICE 100 is an annual list of individuals recognized for their positive contributions to the life-sciences industry. These people actively demonstrate what it means to think bigger and lead with passion and integrity. They are nominated by thousands of PharmaVOICE readers throughout the year. We are so pleased to see several of our speakers make the list including:

    Aaron Fleishman, BBK Worldwide, Regina Holliday, Artist and Patient Advocate, Dr Jules Mitchel, Target Health, Dr Ibraheem Mahmood, DrugDev and Badhri Srinivasan, Quintiles. Congratulations to all of them! Congratulations as well to Taren Grom, editor and her team on a beautifully written issue. We are so proud to have PharmaVoice as a media partner on our events.

    To view the 2014 list of the PharmaVOICE 100: http://www.pharmavoice.com/content/digitaledition.html?pg=14

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  • March 11, 2014

  • A Clinical Trial is Like a Restaurant?

    From the Rare Disease Report: by James Radke A Clinical trial needs to be more like a restaurant.  Let me explain…. I’m here at the Patients As Partners and have listened to several excellent presentations explaining different methods  that companies are using to help engage patients in the clinical trial process. All the presentations have […]

    From the Rare Disease Report: by James Radke

    A Clinical trial needs to be more like a restaurant.  Let me explain….

    I’m here at the Patients As Partners and have listened to several excellent presentations explaining different methods  that companies are using to help engage patients in the clinical trial process. All the presentations have been great but the one that really sparked conversations among the audience was a presentation near the end of the first day.  It was given by a person with no clinical trial experience. Nor clinical experience. In fact, she was not even involved in the healthcare industry.

    Susan Salgado, PhD, Managing Partner at Hospitality Quotient is in the restaurant business. Hospitality Quotient owns restaurants. And as a business, they understand their profits will only materialize if they have a lot of repeat customers.  And in their business,  customers will only be repeat customers if the staff in the restaurant make the customers feel good about eating at the restaurant.

    Dr Salgado said this concept was best summed up by a quote from Maya Angelou who wrote:

    People will forget what you said…
    People will forget what you did….
    But people will never forget the way you made them feel.

    Susan1SusanVal
    Susan Salgado, Hospitality Quotient and Valerie Bowling, the Conference Forum at Patients as Partners

    That mindset is the key to many popular restaurants.  And Dr Salgado believes that mindset needs to be how the pharmaceutical industry should perceive the patients in their clinical trials. If a patient feels good about being in a clinical trial, they will adhere to the rules and regulations of the trial, they will be on time, they will go to every check up, spinal tap, blood draw, etc.  If the patient truly feels the staff are creating an environment that shows they are all working together to advance science, then the patient will comeback. In clinical trials, that is measured by the retention rate. In the restaurant business it is called a repeat customer.

    Dr Salgado’s presentation was very well received by the audience of clinical trial professionals in the room. Unfortunately, the quantitative and regulatory aspects of clinical trials make it very difficult for the process be a fun, let alone be a personable affair. But, if companies want to retain patients and make sure they comply with all of the rules and regulations throughout the clinical trial, it may help to take a few pointers from other altruistic businesses.

    On the plus side, companies are making great strides towards engaging the patients more. Just like a restaurant can improve its service based on customer feedback, pharmaceutical companies are  listening to patients and trying to have them be more involved in the clinical trial process. There were many examples of that on display at Patients As Partners. For example, people from the Center for Information & Study on Clinical Research Participation (CISCRP), Quintiles, Sanofi, Genentech, FDA, Eli Lilly, etc, were all at the conference and provided amazing examples of how they are focusing more on the patients when developing and conducting their clinical trials.

    So will the patient ever be at the level where they will give the pharmaceutical executive a tip for their great service?  Not a chance … but it is something to strive towards and in the long run, it is probably a good mindset to have.At the Patients as Partners event, Susan Salgado, PhD, Managing Partner, Hospitality Quotient discussed how clinical trials need to be more like restaurants. The Rare Disease Report covered the conference and Susan’s presentation.

    View more Rare Disease Report Article here.

    Many thanks to all our speakers, sponsors, attendees & media partners.

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  • March 7, 2014

  • MMG Wins Patient Idol At Patients as Partners Event

    The 1st Annul Patients as Partners event brought together industry, patients, patient advocacy, sites, the FDA, academia and service providers. The program took a careful view of the patient experience and how we engage with patients across the entire clinical trial continuum.  Patients as Partners featured a “Patient Idol” section where four companies presented their […]

    The 1st Annul Patients as Partners event brought together industry, patients, patient advocacy, sites, the FDA, academia and service providers. The program took a careful view of the patient experience and how we engage with patients across the entire clinical trial continuum.  Patients as Partners featured a “Patient Idol” section where four companies presented their unique technologies and services that enhance the clinical trial experience. MMG was chosen as the winner by the following judges:

    • Jacqueline Cole, Clinical Operations Portfolio Management, Oncology, Eli Lilly
    • Victoria Dibiaso, Head of Investigator & Patient Networks, Sanofi
    • Komathi Stem, Senior Director, Product Development, Innovation Lead, Genentech
    • Richard Woodman, MD, Franchise Head, Hematology, Global Medical Affairs, Novartis

    The presenting companies included: ArtCraft, CureLauncher and Study Scavenger.

    Congratulations to MMG!

        Helenwithjudges HelenandANgelica

    MMG is a full-service global health communications group that specializes in patient recruitment
    and retention. Their mission is to improve healthy behaviors through public health awareness
    campaigns and to help advance science by accelerating participation in clinical trials. For more
    information about MMG, please visit: www.mmgct.com. For further information about the event
    or MMG, please contact Jessica Rothenberg Jessicar@theconferenceforum.org.

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  • January 30, 2014

  • Barriers and Limitations in Engaging Patients in Clinical Trials

    Join guests Kerri Weingard, ANP, COO, Verified Clinical Trials and Susan Salgado, PhD, Founder, Hospitality Quotient as they identify the barriers and limitations in engaging patients in clinical trials. What we can do about it through communication and service? Hosted by Valerie Bowling, Executive Director, the Conference Forum, this episode addresses one of the hottest […]

    Join guests Kerri Weingard, ANP, COO, Verified Clinical Trials and Susan Salgado, PhD, Founder, Hospitality Quotient as they identify the barriers and limitations in engaging patients in clinical trials. What we can do about it through communication and service? Hosted by Valerie Bowling, Executive Director, the Conference Forum, this episode addresses one of the hottest topics at the Patients as Partners event scheduled for March 3-4, 2014 in Philadelphia. For more information, visit www.theconferenceforum.org

    To listen to the episode click here.

    About our Guests:

    Susan Reilly Salgado, PhD founded Hospitality Quotient with Danny Meyer in 2010.  Hospitality Quotient offers customized advice and training to inspire, build and sustain a company culture of service in organizations across industries.  In addition to her PhD, Susan holds a BS and an MBA from Lehigh University. Susan has also served as an instructor in organizational behavior and business strategy at NYU and as a guest lecturer at Lehigh.

    Kerri Weingard is the chief operating officer at Verified Clinical Trials (VCT), a New York-based firm specializing in ensuring the integrity of medical studies and clinical trials by creating a database of research study participants trials. Ms. Weingard, who is a nurse practitioner, holds a master’s degree in science from Stony Brook University. She has conducted over 500 clinical trials as a research coordinator and sub-investigator.

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  • January 20, 2014

  • Patients As Partners State of the Industry Address

    How good are we at keeping patients is the focus of the State of Address being delivered by Ken Getz, Director of Sponsored Research, Tufts CSDD and Founder, CISCRP. Ken’s State of Address breaks down the pharma-patient relationship and identifies: Metrics specific to recruitment and retention effectiveness Root causes of poor enrollment performance Opportunities to […]

    How good are we at keeping patients is the focus of the State of Address being delivered by Ken Getz, Director of Sponsored Research, Tufts CSDD and Founder, CISCRP. Ken’s State of Address breaks down the pharma-patient relationship and identifies:

    • Metrics specific to recruitment and retention effectiveness
    • Root causes of poor enrollment performance
    • Opportunities to optimize recruitment and retention
    • Comprehensive models and solutions to engage the public
      and patients as partners

    ​Following Ken’s State of Address, he will co-chair together with David Coman, SVP Communications and Patient Recrutiment, Quintiles. Ken and David lead a team of industry, academia, patient advocacy, patients and the FDA to address solutions to breaking down barriers to vastly improve the patient experience in clinical trials.

    Ken Getz B&WKen Getz, MBA
    Director of Sponsored Research
    Tufts CSDD

     

     

    David Coman B&W David Coman,
    SVP Communications and Patient Recruitment,
    Quintiles

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  • November 27, 2013

  • The Conferences Forum Launches Patients as Partners Event

    Patients as Partners (March 3-4, 2014, Philadelphia) takes a comprehensive view of the patient experience and how we engage with patients across the entire clinical trial continuum. This includes early research, patient-centric protocol design, recruitment, retention, engagement, and communicating results with patients acting as ambassadors and educators. The Conference Forum is proud to present Patients as Partners with CISCRP’s […]

    Patients as Partners (March 3-4, 2014, Philadelphia) takes a comprehensive view of the patient experience and how we engage with patients across the entire clinical trial continuum. This includes early research, patient-centric protocol design, recruitment, retention, engagement, and communicating results with patients acting as ambassadors and educators.

    The Conference Forum is proud to present Patients as Partners with CISCRP’s founder Ken Getz as conference chair, along with an exciting speaking faculty representing industry, advocacy, academia, patients and the FDA. Together, they address the latest strategies, technologies and policies to vastly improve the patient experience in clinical trials. The conference addresses how sponsors of clinical trials can realistically partner with patients and how patients can partner with sponsors to meet the demands of:

    • Evolving Science: Personalized Medicine
    • Higher Quality Data
    • Lower Dropout Rates
    • New Therapies Faster to Market

     

    Patients as Partners takes a broad view of the patient experience and how we engage with patients across the entire clinical trial continuum. This includes early research, patient-centric protocol design, recruitment, retention, engagement, and communicating results with patients acting as ambassadors and educators.

    “If you put the patient lens in front, you start to come up with some really solid answers and solutions.” – Jeffrey Kasher, PhD, Eli Lilly

    The conference is designed for clinical trial executives in pharma and biotech, directors in patient advocacy and academia, and service providers who are looking to incorporate the patient perspective throughout the clinical trial process, valuing patients and treating them as partners, ultimately leading to more successful clinical trials. Take advantage of the first early bird and register by December 20th.

    Speaking Faculty:

    •     Annette Bar-Cohen, MA, MPH, Executive Director, Center for NBCC Advocacy Training

    National Breast Cancer Coalition

    •     Lily Cappelletti, Associate Director, Research Partnerships, The Michael J. Fox

    Foundation for Parkinson’s Research

    •     Lama Chahine, MD, Instructor of Neurology, Parkinson’s Disease and Movement

    Disorders Center,University of Pennsylvania

    •     Jacqueline Cole, Clinical Operations Portfolio Management, Oncology, Eli Lilly
    •     Maria Corvez, Clinical Research Manager II, Millennium Pharmaceuticals
    •     Iris Culbert, Senior Clinical Project Manager, Global Clinical Operations, Teva

    Pharmaceuticals

    •     Daniel Davis, Oncology Business Unit Advisor, Eli Lilly
    •     Victoria DiBiaso, Head of Investigator & Patient Networks, Sanofi Genzyme
    •     Adam Dole, Presidential Innovation Fellow, The White House*
    •     Ken Getz, MBA, Director of Sponsored Research / Founder, Tufts CSDD / CISCRP
    •     Stuart Horowitz, PhD, MBA, President, Global Professional Services, WIRB Copernicus

    Group

    •     Andreas Koester, MD, PhD, VP, Clinical Trial Innovation & External Alliances, Janssen
    •     Craig Lipset, MBA, Head of Clinical Innovation, R&D, Pfizer
    •     Debra Lounsbury, Principal Scientist, BioMarin
    •     Kimberly McCleary, Director, Strategic Initiatives, FasterCures
    •     Nariman Nasser,Digital Strategist, Genentech
    •     Bray Patrick-Lake, BS, MFS, Director of Stakeholder Engagement, Clinical Trials

    Transformation Initiative

    •     Christine Pierre, President, Society for Clinical Research Sites
    •     Tomasz Sablinski, MD, PhD, Founder & CEO, Transparency Life Sciences
    •     Jean Slutsky, PA, MSPH, Director, Center for Outcomes and Evidence Agency for

    Healthcare Research and Quality

    •     Komathi Stem, Senior Director, Product Development, Innovation Lead, Genentech
    •     Andrea Tan, Operations Research Analyst, Office of Strategic Programs, CDER, FDA
    •     Ronnie Todaro, Vice President, National Programs / Co-Chair, Parkinson’s Disease

    Foundation / CTTI Patient Leadership Council

    •     Jennifer Wulff, Director, Clinical Innovation, Pfizer*
    •     Anthony Yanni, Head of Patient Value & Strategy, Sanofi Genzyme

     

    *Invited speakers

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