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  • March 9, 2018

  • Patient Perspectives: Deciding on Participating in a Clinical Trial

    By Marie Recine, Patient Advocate, Medical Writer and Speaker at the Patients as Partners Conference To me, clinical trials are an important treatment option at all stages of a disease. The benefits are numerous. Patients who enroll in clinical trials receive close monitoring and have the opportunity to be among the first to receive the […]

    By Marie Recine, Patient Advocate, Medical Writer and Speaker at the Patients as Partners Conference

    To me, clinical trials are an important treatment option at all stages of a disease. The benefits are numerous. Patients who enroll in clinical trials receive close monitoring and have the opportunity to be among the first to receive the newest drugs or drug combinations in development and to advance clinical research.

    Unfortunately, many patients are not informed of clinical trials as an option, or they may only hear about clinical trials after all other options have been exhausted. Another important barrier to clinical trial participation is patient misconception about clinical trials in general.

    Even when patients are aware of clinical trials, whether or not to participate is not an easy decision to make. Shared decision-making between patients and their physicians is critical. With shared decision-making, both parties work together to balance a physician’s experience and expertise with a patient’s preferences and values.

    In my experience, some of the top considerations raised by patients when deciding on participating in a study include:

    • The potential risks involved with the investigational treatment/study
    • The benefits and risks of the other standard treatment options available to them
    • The time commitment—not only the number of study visits, but whether their time will be utilized wisely at each visit
    • Whether the study has a placebo or active control, and if a placebo control, what proportion of patients will be in the placebo arm (a friend declined to participate in a placebo-controlled trial for a new multiple sclerosis drug because she felt she could not risk the chance of being off medication for the duration of the study and experiencing a relapse)
    • Whether there are results of any earlier studies of the treatment being investigated
    • Whether participation in the study will limit their future treatment options

    The Role of Advocacy Groups

    Advocacy groups can play a key role in increasing the awareness of the need for clinical trial participation among healthcare professionals and encourage their consideration of clinical trials as a treatment option for their patients. They can also help support patients while deciding whether or not to participate in a clinical trial. As knowledge is a key component of patient-clinician decision-making, providing information to help facilitate these decisions is vital.

    Below are suggestions for providing information, which can be both general to clinical trials, as well as more tailored to a specific condition.

    • Start with the basics

    Provide easy-to-understand information on the nuts and bolts of clinical trials, which can help dispel any myths or misconceptions patients may have about clinical trial participation.

    • Provide suggested questions patients might ask to help their decision-making

    These may include some basic questions to ascertain patient goals and expectations, but should focus on questions about the study design and goals, the possible risks and benefits, participation commitments and care received, and cost and logistics issues.

    • Provide a decision aid

    When patients are provided decision aids to help them make treatment choices, they are more knowledgeable and satisfied with their care. Decision aids can be presented in many forms, including interactive tools, videos, and educational literature. With a clinical trial decision aid, patients can learn more about clinical trial participation, balancing the potential benefits and risks, and helping them prepare for conversations with their doctor.

    • Share patient stories

    Presenting patient stories helps to put a human face on clinical trial participation. As patients often request to speak to others who have participated in a trial, having access to speak to other patients in the study or patient volunteers who have such experience is always welcomed.

    Ms Recine is speaking at the Patients as Partners conference on March 15-16, 2018 at the Rittenhouse in Philadelphia. For more information, visit www.theconferenceforum.org.

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  • March 7, 2018

  • New York Times Op-Ed Columnist Frank Bruni Joins a Clinical Trial as a Care Option

    In a recent Sunday Review article in The New York Times, op-ed columnist Frank Bruni asked himself, “Am I Going Blind?” After waking up one morning with what felt like “a blob of petroleum jelly in my right eye,” several hours passed before Mr Bruni finally accepted that something was wrong. A visit to his […]

    In a recent Sunday Review article in The New York Times, op-ed columnist Frank Bruni asked himself, “Am I Going Blind?” After waking up one morning with what felt like “a blob of petroleum jelly in my right eye,” several hours passed before Mr Bruni finally accepted that something was wrong.

    A visit to his ophthalmologist quickly led to a neuro-ophthalmologist. Here, Mr Bruni learned that he had likely suffered “a stroke of the eye” affecting the optic nerve in a condition called nonarteritic anterior ischemic optic neuropathy (NAION).

    As a rare affliction affecting around one in 10,000 people, Mr Bruni’s neuro-ophthalmologist informed him she had nothing to offer him. Except perhaps one thing: a clinical trial of an experimental treatment. With no other treatment available, Mr Bruni decided to join the clinical trial as a care option.

    Making clinical trials a care option is arguably the greatest challenges that healthcare and clinical research ecosystems can collaborate on in bringing patients closer to clinical trials. We continue our focus on this topic at the Clinical Research as a Care Option event on April 11th at the Boston Marriott Cambridge in Massachusetts. In the one-day program, we look at how to integrate clinical research into the overall continuum of patient care and ask, how do we bring clinical research closer to patients and vice versa.

    We also address how to involve patients throughout the entire medicines development life cycle to drive greater efficiencies in clinical research at the Patients as Partners US conference. The two-day program takes place on March 15-16, 2018 in Philadelphia.

     To read Mr Bruni’s article, click here: “Am I Going Blind?”

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  • March 5, 2018

  • Go Red for Women Patient Advocacy and Wellness Event Big Success on March 5 in NYC

      Congratulations to Elizabeth Elting and Jessica Eker, co-chairs of the Go Red for Women event in NYC on March 5. This American Heart Association, patient advocacy and women’s wellness event was a huge success in raising a record amount of funds to help put an end to heart disease and stroke. Heart disease is the leading […]

    Valerie Bowling, Conference Forum, Elizabeth Elting, Co-Chair, Go Red for Women, NYC and co-founder, Transperfect and Sonia Ossorio, President, NOW, NYC

     

    Congratulations to Elizabeth Elting and Jessica Eker, co-chairs of the Go Red for Women event in NYC on March 5. This American Heart Association, patient advocacy and women’s wellness event was a huge success in raising a record amount of funds to help put an end to heart disease and stroke.

    Heart disease is the leading cause of death in women, especially over 50. Through Go Red, women are empowered to take charge of their health by learning their family history, knowing their numbers and understanding the warning signs and risk factors.

     

    Elizabeth Elting addressing the audience at Go For Red NYC

     

     

     

     

     

    The American Heart Association hosts more than 180 Go Red for Women events across the country. The Conference Forum’s Executive Director, Valerie Bowling was honored to be Elizabeth’s guest.

     

    A sea of red at Go Red for Women in NYC

     

     

    The event was great reminder for all women and, of course, men to not put their health last, but to keep it high up their list of priorities. The main sponsors included Macys, CVS Health, Northwell Health, the Elizabeth Elting Foundation and Mount Sinai Heart.

     

     

    Valerie Bowling at Go Red for Women in NYC

     

    Elizabeth is the co-founder of TransPerfect, which has been serving the translation needs of the pharma and other industries for more than 20 years.  For more information about Go Red, visit GoRedForWomen.org.

     

    Go Red for Women, March 5, 2018, NYC

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  • January 16, 2018

  • CISCRP Delivers Global Assessment of Patient Perceptions of Clinical Research

    Annick Anderson, Director of Research Service at the Center for Information and Study on Clinical Research Participation (CISCRP), will detail the 2017 Perceptions & Insights study findings during a presentation at the 2nd annual Patients as Partners EU conference. The presentation, “Global Assessment of Patient Perceptions of Clinical Research – A Stakeholder’s Call to Action,” will describe […]

    Annick Anderson, Director of Research Service at the Center for Information and Study on Clinical Research Participation (CISCRP), will detail the 2017 Perceptions & Insights study findings during a presentation at the 2nd annual Patients as Partners EU conference. The presentation, “Global Assessment of Patient Perceptions of Clinical Research – A Stakeholder’s Call to Action,” will describe how industry stakeholders can leverage the study insights to make a difference. Additionally, the presentation will emphasize how clinical research professionals can bolster their clinical trials in several areas, including:

    •      Bridging the gap between clinical research professionals and patients
    •      Developing educational initiatives to highlight the value of clinical research for patients
    •      Nullifying lost clinical trial enrollment opportunities
    •      Improving the clinical trial volunteer experience
    •      Raising clinical research awareness and shaping perceptions among patients

    The 2017 Perceptions & Insights study offers insights into the public and patient perceptions of clinical research. It included responses from 12,427 participants from pharmaceutical, biotechnology and contract research organizations and investigative sites. The study also resulted in reports on the following topics:

    •     Participation Experience: Explores aspects of the clinical research participation experience and highlights opportunities to drive patient engagement.
    •     Participation Decision-Making Process: Examines the decision-making process for clinical research stakeholders and offers insights into how these stakeholders can help patients make informed decisions.
    •     General Perceptions and Knowledge on Clinical Research: Provides insights into the general perceptions and knowledge of global clinical research and how clinical research professionals can provide educational resources to enhance patient partnerships.

    Thanks to the 2017 Perceptions & Insights study, clinical research professionals can assess all aspects of the patient perspective of clinical research. The study paints a picture of how patients view clinical research and provides valuable insights that may lead to more engaging, effective and innovative clinical trials than ever before.

    We are proud to host Anderson and other clinical research experts and patients at this year’s Patients as Partners EU conference. Click here to register for the event, and follow Patients as Partners EU discussions on Twitter using hashtag #PatientsEU2018.

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  • January 10, 2018

  • What to Expect at the 2nd Annual Patients as Partners EU Conference

    The 2nd annual Patients as Partners EU conference is right around the corner and we are pleased to announce the event agenda is available on-line. This program is the only conference in Europe co-produced with industry and patient advocacy that demonstrates how to involve patients throughout the entire medicines development life cycle to drive greater […]

    The 2nd annual Patients as Partners EU conference is right around the corner and we are pleased to announce the event agenda is available on-line. This program is the only conference in Europe co-produced with industry and patient advocacy that demonstrates how to involve patients throughout the entire medicines development life cycle to drive greater efficiencies in clinical research.

    Patients Included, Ask the Patient Program and Patient Tool Box

    The Patients as Partners EU program is officially Patients Included-accredited. It is the only event in Europe with the “Ask the Patient” program, which provides face-to-face opportunities to speak with patients who’ve experienced a clinical trial and includes our Patient Toolbox to capture key ideas and actions.

    Unparalleled Patient Collaboration

    Dr Alexandra Moutet will discuss how UBC has incorporated the patient into every stage of the medicine lifecycle. Also, our Patients as Partners EU program features case studies from Bristol-Myers Squibb, Pfizer and Santhera Pharmaceuticals that provide real world insights into patient involvement in clinical research.

    Amgen’s Dr Tony Hoos leads a multi-stakeholder discussion on what good patient practice looks like and how the quality of patient involvement has evolved since the induction of multiple initiatives.

    Claire Nolan and Chris Macdonald will share the patient advocacy organization perspective on how to strike a practical balance of delivering effective research outcomes whilst ensuring relevance through principled and meaningful patient involvement.

    Notable Sessions

    Genetic Alliance UK Director Alastair Kent will kick off day two of Patients as Partners EU with a session that focuses on what a patient-centered healthcare system will look like in the next five to 10 years. Other notable event speakers include Jennifer Kelly, who will discuss how to implement patient opinion leader advisory boards, and Dr Clare Shaw, who will examine ways to empower the public to sign up for clinical trials.

    Real World Insights

    CISCRP presents the findings from their Patient Perceptions & Insights two-year study to help you identify opportunities to better inform and engage patients as partners in clinical research. CISCRP’s Director of Research Services, Annick Anderson will present the findings.

    Patient View on Mobile Technology in Clinical Trials

    Cancer Survivor Cindy Geoghegan will share details about a US Clinical Trials Transformation Initiative project involving patient perspectives on mobile in clinical trials.

    EMA 1st Public Hearings Update

    Nathalie Bere, MSc, of the European Medicines Agency (EMA) will provide an update on the first public hearing with patients on risk assessment. Additionally, Patient Advocate and Patient Advocate Highlights:

    • Claire NolanResearch Involvement ManagerParkinson’s UK
    • Richard StephensPatient/Consumer Lead, Chair Consumer ForumNational Cancer Research Institute
    • Chris MacdonaldResearch Involvement ManagerArthritis Research UK
    • Bettina RyllFounderMelanoma Patient Network Europe
    • David HaerryPatient and AdvocateEuropean AIDS Treatment Group
    • Viorica CursaruPatient AdvocateMyeloma Euronet Romania

    Networking Opportunities

    Networking opportunities are readily available during breakfast, lunch breaks, the reception an in the exhibit room. Attendees can ask questions to the speaking faculty throughout the event. Plus, our Medical Heroes are available to answer questions about their clinical trial experience.

    Building a Better Future

    The Patients as Partners EU conference room will be set up in rounds, and each table will be provided with a “Toolbox” and an assortment of materials to help you capture ideas. Meanwhile, each session concludes with a list of key takeaways, which means you will walk away with a toolbox full of ideas to drive patient partnerships.

    Click here to register for the 2nd annual Patients as Partners EU conference, and follow the event discussions on Twitter using hashtag #PatientsEU2018.

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  • January 2, 2018

  • Patients as Partners EU: 5 Minute Overview

    Patients as Partners EU is the only conference in Europe that demonstrates how to involve patients throughout the the entire medicines development life cycle to drive greater efficiencies in clinical research. Join us in London on January 23-24, 2018 as we continue the discussion around patient involvement across the entire clinical development continuum.

    Patients as Partners EU is the only conference in Europe that demonstrates how to involve patients throughout the the entire medicines development life cycle to drive greater efficiencies in clinical research.

    Join us in London on January 23-24, 2018 as we continue the discussion around patient involvement across the entire clinical development continuum.

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  • December 20, 2017

  • “Patients as Partners” returns to Europe on January 23-24, 2018 in London, UK

    The Conference Forum is pleased to announce the 2nd annual Patients as Partners Europe (Patients EU) event in London on January 23-24, 2018. Shaped by patients involved in clinical trials, the conference takes a comprehensive view of the patient experience and how to engage with them across the entire clinical trial continuum. Participants will continue the conversation […]

    Patients UK bannerThe Conference Forum is pleased to announce the 2nd annual Patients as Partners Europe (Patients EU) event in London on January 23-24, 2018. Shaped by patients involved in clinical trials, the conference takes a comprehensive view of the patient experience and how to engage with them across the entire clinical trial continuum. Participants will continue the conversation on how increased 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.

    “Patients as Partners is the only conference where the research is led equally by patients alongside industry, government and academia,” says Jennifer Moran, Program Manager, “The conference is devoted to understanding not only the patient perspective on the design of a clinical trial, but also the patient experience in the clinical trial to ultimately figure out how to drive greater efficiencies.”

    Program leadership for 2018 includes our two Co-Chairs Dr Tony Hoos, Head of Medical at Amgen Europe and Andrew Garvey, Global Patient Advocacy Lead at GlaxoSmithKline; Dr Claire Nolan, Research Involvement Manager at Parkinson’s UK; Irmi Gallmeier, Senior International Health Policy Leader, Patient Relations at F. Hoffman La Roche; Richard Stephens, Patient/ Consumer Lead at National Cancer Research Institute; and Guy Yeoman, VP, Patient Centricity and Global Medical Affairs at AstraZeneca.

    Featured sessions include: 

    • Multi-stakeholder panel on “What Good Patient Involvement Looks Like”
    • Town hall style discussion on “Patient Engagement Metrics and Value”
    • Industry case studies on incorporating patient involvement with Bristol-Myers Squibb, Santhera Pharmaceuticals and UCB
    • Demonstration on “How Advocacy is Working with Pharma in a Meaningful Way to Involve Patients in Medicines Development” led by Parkinson’s UK and Arthritis Research UK
    • Results shared on “CISCRP’s Global Assessment of Patient Perceptions of Clinical Research – A Stakeholders Call to Action”

    Patients EU will once again host an “Ask the Patient” program in which attendees can meet face-to-face with patients, who have experienced at least one clinical trial. These patients provide a unique opportunity to learn about the realities of a clinical trial directly from the patient’s point of view. The meetings with patients will be both assigned and adhoc throughout the program.

    Patients EU is accredited by “Patients Included” to help address what matters most to patients, enabling 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

    About Patients as Partners 
    Patients 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 Patients EU program will be located at the Radisson Blu Portman Hotel London on January 23-24, 2018. For more information, visit Patient as Partners Europe.

    [original PRWeb post]

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  • 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.

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  • November 7, 2017

  • Partnering with Patients in the Lifecycle of Medicine Development

    PharmaTalkRadio highlights Nicholas Brooke, Chief Executive, Patient Focused Medicines Development (PFMD) and Jan Geissler, Director, European Patients’ Academy on Therapeutic Innovation (EUPATI) call on industry to partner with patients in the development and lifecycle of medicines. The Patients as Partners Europe program seeks to understand and incorporate the patient’s voice in designing clinical trials and developing a […]

    PharmaTalkRadio highlights Nicholas Brooke, Chief Executive, Patient Focused Medicines Development (PFMD) and Jan Geissler, Director, European Patients’ Academy on Therapeutic Innovation (EUPATI) call on industry to partner with patients in the development and lifecycle of medicines.

    The Patients as Partners Europe 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 2nd annual Patients as Partners EU event will be held January 23-24, 2018 at Radisson Blu Portman Hotel, London, UK.


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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 1, 2017

  • Innovative Ways of Patient Involvement in Medicines Development

    Originally recorded at the inaugural Patients as Partners Europe event, held in London in February 2017. Patient, industry, and regulatory perspectives are provided by Alastair Kent of Genetic Alliance UK, Dr Anton Hoos of Amgen Europe, and Isabelle Moulon of the EMD as they discuss on innovative ways of to include patient involvement in medicines development. […]

    Originally recorded at the inaugural Patients as Partners Europe event, held in London in February 2017. Patient, industry, and regulatory perspectives are provided by Alastair Kent of Genetic Alliance UK, Dr Anton Hoos of Amgen Europe, and Isabelle Moulon of the EMD as they discuss on innovative ways of to include patient involvement in medicines development.

    The Patients as Partners Europe 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 2nd annual Patients as Partners EU event will be held January 23-24, 2018 at Radisson Blu Portman Hotel, London, UK.


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  • July 20, 2017

  • Patients Influencing Policy in the EU

    Alastair Kent, Director of the Genetic Alliance UK, talks about how patients can and are influencing policy within the EU. The Patients as Partners Europe 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. […]

    Alastair Kent, Director of the Genetic Alliance UK, talks about how patients can and are influencing policy within the EU. The Patients as Partners Europe 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 2nd annual Patients as Partners EU event will be held January 23-24, 2018 at Radisson Blu Portman Hotel, London, UK.


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  • July 14, 2017

  • Unlocking the Power of Patient Engagement within Clinical and Commercial

    At the inaugural Patients as Partners Europe event, Duncan Arbour from inVentiv Health explores the ‘how’ and ‘when’ for involving patients within clinical and commercial to enhance the development and delivery of innovative therapies.  The patient voice as a strategic driver is being included much earlier in the development process than ever before. In this session, […]

    At the inaugural Patients as Partners Europe event, Duncan Arbour from inVentiv Health explores the ‘how’ and ‘when’ for involving patients within clinical and commercial to enhance the development and delivery of innovative therapies. 

    The patient voice as a strategic driver is being included much earlier in the development process than ever before. In this session, pharmaceutical, biotech and device companies will gain insight into the value of smarter patient integration. Key focus areas include:
    • The critical shift from drug-centric to patient-relevant
    • Pivotal patient touch points throughout clinical development and launch planning that will maximize both clinical and commercial outcomes
    • Positive impact of integration on efficiency and commercialization

    The Patients as Partners Europe 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 2nd annual Patients as Partners EU event will be held January 23-24, 2018 at Radisson Blu Portman Hotel, London, UK.


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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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  • February 15, 2017

  • Takeaways from Inaugural Patients as Partners Europe Meeting

    The Conference Forum held the inaugural Patients as Partners Europe (Patients EU) conference in London on February 6-7, 2017, in response to requests from European attendees at the previous Patients as Partners US events to bring the conference abroad. Patients as Partners is Patients Included-accredited and the research is driven equally by patients and advocacy alongside […]

    The Conference Forum held the inaugural Patients as Partners Europe (Patients EU) conference in London on February 6-7, 2017, in response to requests from European attendees at the previous Patients as Partners US events to bring the conference abroad.

    Patients as Partners is Patients Included-accredited and the research is driven equally by patients and advocacy alongside industry, government and academia. The Patients as Partners conference, both in the EU and the US, is devoted to understanding and incorporating the patient’s voice in designing clinical trials and developing a clinical endpoint, as well as vastly improving the patient’s entire experience in a clinical trial.

    Through the on-site activities, including the Patient Engagement Toolbox, each attendee walked away with a “toolbox” full of strategies to continue to support their patient involvement initiatives. Listed below are many takeaways discussed during Patients EU. We look forward to seeing everyone again for the 2nd annual event in 2018!

    Day One takeaways:

    • The interests of patients are best served when industry and patient groups work in partnership
    • Key to the success of such partnerships are trust and transparency
    • Several examples exist that exemplify best practice that should give confidence to those about to embark on such a partnership
    • Engaging with Patients;
      • Helps bridge the gap between clinical trial data and real world data which ultimately leads to more meaningful outcomes for all concerned
      • Increases transparency and trust in the system
    • Engagement should be mutually beneficial; use a flexible step-by-step approach, to learn together what format works best
    • Provide support – define roles – manage expectations – give feedback
    • Everyone benefits from knowledge sharing
    • Opportunities to engage patients exist across all aspects of drug development and the patient journey
    • To improve drug and device development the patient voice should be routinely solicited
    • Patient involvement in medicines development and assessment is essential to ensure that the added value of a new medicine to patients is clearly understood
    • Patients have unique experiential knowledge about living with the condition that can inform clinical trial design to ensure the outcomes that matter most to patients are studied
    • Patient organizations can invest in research and contribute to comparative effectiveness programs to fill evidence gaps or uncertainties in value assessments.
    • It is critical to assess outcomes defined by patients living with the disease and its treatment
    • Considering “Patient-Centered Outcomes” requires us to have a comprehensive understanding of patients’ needs and priorities. This information can be coupled with the needs of others to develop an outcomes measurement plan that evaluates outcomes that matter
    • Outcomes may include concepts that are best measured using patient-reported outcome measures (PROMs), but not all patient-centered outcomes are best-measured in this way.
    • Engaging in and implementing a novel patient-centric service requires commitment, dedicated time, cooperation, collaboration and investment by sponsor and partner vendors
    • Results can be fruitful-ambulant care at-home visits can reduce the burden on study participants by making it more convenient and comfortable for them and their families- ultimately resulting in faster enrollment, better compliance and higher retention and higher satisfaction for all parties
    • Feedback to patients is essential to encouraging data sharing
    • Transparency about how data are shared and giving patients control will reveal new possibilities

    Day Two takeaways:

    • Patient organizations can help you find patients to work with and offer guidance and support to develop meaningful involvement.
    • Patient engagement should be as early as possible, preferably before a clinical trial protocol has been finalized.
    • Patient groups tend to have the best databases of patient details, which is essential for rare disease trials.
    • Build trust & manage expectations (a new drug with maximum efficacy and no side effects is rarely a realistic goal)
    • Set aside enough funds for patient travel and subsistence and remember some of us need careers too. Allow time to explain things. Slowly and clearly. And probably twice.
    • Keep patients engaged. Tell us what’s happening with the study (and why), tell us the outcomes, and tell us what difference we made (if any).
    • Identify the joint goals (=mutual values) through open & transparent discussion. This will create a win/win situation.
    • Need to listen to and communicate with the patient(s)
    • Culture change – we need to continue to evolve and work beyond constraints of “the process”
    • Strive to “remove barriers” for effective patient engagement
    • Patients get ruled out by one of many hurdles to cross, not lack of interest
    • Empower the patient
    • The culture of the treating institution is central to how likely patients are to volunteer
    • Many patients would welcome general information at diagnosis about clinical trials so that treatment planning includes consideration of developing options
    • The most crucial element of the Informed Consent Process is interaction between investigator and patient
    • The investigators need to be made aware of the relevance of an optimized IC process
    • A complete overhaul of the IC preparation process is needed
    • The proposed “10 IC Steps to Success” Plan should be implemented as new standard in clinical trials
    • Informed Consent is a window of opportunity for researchers
    • Write with target audience in mind
    • Involve patient organizations from start
    • Informed Consent process needs input from multiple stakeholders
    • Sponsors have a role to play and should utilize the available guidance, best practice and shared knowledge to support the process that ultimately benefit the patient
    • EFPIA support reinforcement of the elements for “10 IC Steps to Success”, in particular:
      • Putting efforts in simplification
      • Utilizing modern technology
      • Taking patients on board

     

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  • February 1, 2017

  • Tackling rare disease with the voice of patients

    Proponents of big data methodologies are excited about their potential applications in rare disease research, including in: drug discovery; the discovery of disease-related genes, genetic mutations and biomarkers; matchmaking of rare disease cases to help diagnose patients; and drug repurposing. But while great insights can be gleaned from huge datasets, equally valuable and complementary intelligence […]

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    Pete Chan Raremark

    Proponents of big data methodologies are excited about their potential applications in rare disease research, including in: drug discovery; the discovery of disease-related genes, genetic mutations and biomarkers; matchmaking of rare disease cases to help diagnose patients; and drug repurposing.

    But while great insights can be gleaned from huge datasets, equally valuable and complementary intelligence can be derived from rigorous interrogation of datasets that are relatively small.

    Interestingly, a small data movement has emerged in the past few years; its loudest cheerleader being Martin Lindstrom, the Danish author of “Small Data: The Tiny Clues That Uncover Huge Trends”. Mr Lindstrom’s world is that of marketing and branding, but it doesn’t take a huge leap to apply his principles of keen observation of small samples to people living with rare disease.

    And recent work in the field of patient-reported outcomes (PROs) has provided evidence that patient-generated medical data can be of comparable quality to data gathered from traditional sources. A group of US researchers conducted a proof-of-concept study using the chronic lymphocytic leukemia (CLL) community of PatientsLikeMe, a patient-powered research network. There are several PRO instruments specific to CLL, meaning the supporting literature contain data the researchers could use as comparators. Using a combination of online surveys and telephone interviews, they found good alignment between the symptoms that members of PatientsLikeMe’s CLL community said were important to them, and those identified through traditional interviews and patient focus groups.

    Raremark has also been exploring how to involve patients in the area of data sharing and donation, the reasons for doing so, and the implications for the patient community. In line with the small data model, we posed a series of well-defined questions to small groups of patients, using a combination of telephone interviews and online surveys. The study sample comprised Raremark users with an interest in three rare diseases: adrenoleukodystrophy, myasthenia gravis and Sanfilippo syndrome.

    Work conducted from November 2016 to January 2017 revealed an understanding of the importance of data sharing for the benefit of others, and a willingness to do so: 94% of participants said they would feel comfortable sharing selected health-related information about themselves with the community and the pharmaceutical industry.

    Raremark’s findings reflect the results of a larger study by RD-Connect, an EU-funded research initiative in rare disease, that included similar themes. As long as the right governance systems are in place, RD-Connect discovered, the rare disease patient community generally has a positive view on the sharing of data to support medical research. “All the participants understood the incentive for [rare disease] in sharing data and samples; in fact, there were several pleas for research systems to be standardised across the EU in order to make data sharing easier,” the authors wrote in the European Journal of Human Genetics.

    I’ll be discussing the Raremark project in the context of these industry trends at Patient as Partners Europe, which takes place in London on February 6-7, 2017.

    Pete Chan is Head of Research & Analysis at Raremark, a patient-powered research network in rare disease. This blog is an edited extract from Raremark’s white paper: Tackling rare disease with big and small data (http://pages.raremark.com/whitepaper-big-small-data).

    For more information on Patients as Partners EU, view the overview here or register here. Patients in clinical trials or patient advocates in need of a scholarship, please email service@tcfllc.org.

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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

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    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:

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

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    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 […]

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    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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