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2019 Agenda

  • 8:00 am

  • Registration and Tea/Coffee

  • 9:00 am

  • Chair's Welcome & Opening Remarks

    Andrew Garvey

    Global Patient Advocacy Lead, GlaxoSmithKline

  • Patient Keynote + New Engagement Guidance

  • 9:15 am

  • Patient Keynote: Former Professional English Footballer and Patient Advocate

    Geoff Thomas, former professional footballer who won nine caps for England and captained the Crystal Palace Football Club to the FA Cup final in 1990 was diagnosed in 2003 with chronic myeloid leukaemia and given three months to live. Thanks to great doctors, access to investigational medicines and a bone marrow transplant from his sister, Geoff, 15 years later is helping lead the fight to accelerate science for the benefit of patients. Geoff joins us to talk about his journey through professional sports, the fight against cancer and what he has learned and how he now advocates to help others. Geoff not only fought leukemia, but also helped change the health care system in the UK to get clinical trials as a care option for patients. Join us and find out how.

    Geoff Thomas

    Patient Advocate, Cancer Survivor and Former Professional English Footballer

  • 9:45 am

  • New PFMD Guidance on How to Enhance the Quality of Patient Engagement throughout the Medicines Development

    In this session, Nicholas Brooke, CEO of Patient Focused Medicines Development will share the results and implications of the 2018 guidance on how to enhance the quality of patient engagement. The guidance was co-developed with the input of multiple stakeholders in patient engagement (Industry, Patients Associations, Researchers) to support the PE journey by using a robust methodology whose consequences will be to generate impactful results. Key focus:

    • When to use the tool? Planning and development; Quality and impact assessments; and Gap analysis.
    • How to assess the 7 quality criteria in your patient engagement practices
    • Show the aggregation of data, to date, on the impact of the guidance since it launched

    Nicholas Brooke

    CEO, Patient Focused Medicines Development (PFMD)

  • Pharma Case Studies Part 1: Applying Patient Engagement Initiatives and Demonstrating Impact

    Pharma and biotech share tangible examples of how patients were involved in clinical development and trial initiatives, how they implemented patient input, challenges faced and the outcomes to the initiatives as a result of including patients.

  • 10:10 am

  • Don’t Do Different things – Do Things Differently! Key learnings from Santhera Pharmaceuticals when Piloting the PFMD Patient Engagement Quality Guidance

    In this session, Dr Vanessa dos Reis Ferreira, Head of Patient Advocacy Europe at Santhera Pharmaceuticals will share how, when and where the collection of patient insights is fully integrated into the medicines development process at Santhera. Dr dos Reis Ferreira will walk the audience through how her team has developed best practices through the use of the recently launched PFMD Patient Engagement Quality Guidance, and overall challenges and opportunities when integrating the patient voice.

    Vanessa Ferreira
    Vanessa dos Reis Ferreira, PhD, MBA

    Head Patient Advocacy Europe, Santhera Pharmaceuticals

  • 10:35 am

  • Networking Break

  • 11:15 am

  • Merck's Next Phase of Patient Centricity in R&D: Driving Innovative Medicines Development

    In this session, hear from Vanessa Pott, Patient Advocacy and Strategic Partnerships, on the major work-stream he’s leading on patient centricity as part of an overall change strategy within R&D at Merck.

    Vanessa Pott

    Director, Patient Advocacy & Strategic PartnershipsMerck KGaA

  • 11:40 am

  • How Pfizer is Driving its "Patient First" Global Initiative Across Multiple Departments and Teams

    • Outline of the initiative; implementation strategy, goals and impact
    • The impact of senior leadership support
    • Considerations and differences in getting buy-in from multiple departments
    • Making the initiative accountable
    • Steps to strategic versus operational patient input
    • Barriers or hurdles?

    Berkeley Phillips

    Medical Director, Pfizer


    Jenny Preston

    Senior Patient and Public Involvement Manager, NIHR Alder Hey Clinical Research Facility
  • 12:05 pm

  • Norgine Case Study: How to Develop Effective Relationships through Simultaneous Employee and Patient Engagement

    In 2018 Norgine held their inaugural patient day.  The patients provided input into patient information materials and lay study summaries. During the course of the day the patients were given the opportunity to meet and talk with people working in all aspects of the business. The exercise was designed to achieve a number of things:

    • Breakdown communication barriers between patients and pharma
    • Challenge pharma staff to consider how their job/role benefits or impacts patients
    • How to go about developing a meaningful dialogue without breaching ethical standards and Codes of Practice
    • Building useful and effective relationships in the interests of providing better information to patients.

    In this session hear from both the patients and the Norgine team on their experience.

    Led by:

    Liz Clarke
    Liz Clark, MB BS, MSc, FFPM

    VP Medical Affairs, Norgine


    Lucy Anderson Jones


    Jim Cullen


  • 12:30 pm

  • Connecting Employee Centric Culture to Patient Centric Culture

    • What impact can engaged employees have on positioning the company as the preferred partner for patients and other collaborators?
    • How can this be done? And for what purpose?
    • How do you engage your employees and empower them to implement patient involvement strategies?
    • Inspiring employees to make change?

    Lode Dewulf, MD

    Chief Patient Officer, Servier

  • 12:50 pm

  • Taking the Study to the Patient – A True Patient-Centric Service

    Patient recruitment and retention remain the greatest challenges in clinical trials in the traditional clinical trial model.  GlobalCare creates opportunities for patients to participate in a location that is both convenient and comfortable.  By conducting selected protocol visits at the patient’s home, work-place, school, travel destination, or other alternate-location, more patients are willing and able to participate and remain in a study. 

    • How does this service model work and can it be easily implemented?
    • Successful case studies incorporating these patient-centric services
    • Win-win benefits for all stakeholders to speed the development of life-enhancing products to the market

    Gail Adinamis
    Founder and CEO, GlobalCare Clinical Trials
  • 1:05 pm

  • Lunch

  • Matching Communication Styles for Patients

  • 2:15 pm

  • What is the Process to Understand the Language of Patients - the Value of Health Literacy

    • Who is responsible for delivering the why and how of getting involved in medicines development? Pharma, regulators or advocacy groups?
    • What practical goals can the industry set to effect change?
    • How are we communicating the trial information to patients and care partners to help them understand and make informed decisions?
    • How can we address the communication challenges faced by patients and care partners while navigating the system?
    • Considerations for language used in adverse events reporting, informed consent and clinical trial summaries

    James (Jay) Duhig, PhD

    Director, Patient Integration, Pharmacovigilance and Patient Safety (PPS)AbbVie

  • 2:45 pm

  • Addressing the Urgent Need for Plain Language Summaries for Clinical Trials and Medical Publications

    • What type of information do the different stakeholders want communicated
    • Considerations for publishing a clinical trial summary for patients: format, type of data, language
    • What is considered appropriate language and/or graphics?

    Nicholas Brooke
    CEO, Patient Focused Medicines Development (PFMD)

    Dawn Lobban, PhD

    Division Head, Scientific, Envision Pharma Group

  • 3:15 pm

  • Partnering With CROs/Sites on Patient Engagement

    As we know, most studies are outsourced to CROs/Sites and many of these partners have made serious investments towards greatly improving patient engagement capabilities. This panel will discuss how sponsors and sites are advancing their work to excel at patient engagement to create greater efficiencies and better outcomes for patients. More specifically:

    • How do you engage patients when there is an outsourced study?
    • How do you build patient engagement into your Sponsor/CRO policy and procedures?
    • What should that partnership look like?
    • How can CROs and advocacy better work together and what is the ROE for working together?
    • Examples of positive relationships between CROs and advocacy groups

    Moderated by:

    Lode Dewulf, MD

    Chief Patient Officer, Servier


    Joyce Moore, PhD, MBA

    Director, Patient Recruitment and Retention, ICON

    Rosamund Round
    Director, Patient Innovation Center, Medical and Scientific Services, PAREXEL International
  • 3:45 pm

  • Networking Break

  • Culture + Technology

  • 4:15 pm

  • Keynote: Developing a Patient Centric Culture at Novo Nordisk

    Anders Dyhr Toft
    Anders Dyhr Toft, MD, PhD, MBA

    CVP for Commercial Innovation, Novo Nordisk

  • 4:45 pm

  • Panel: Technologies and Services for Reducing the Burden for Patients and Investigators in Clinical Trials while Driving Better Health Outcomes

    Mobile tools, technology and services are designed to reduce the burden to patients and investigators, collect more accurate data and drive better health outcomes. In this session, hear how technology and new services are having an impact on the clinical trial experience for patients and investigators, and aligning their needs with faster study execution and getting new treatment options to patients quicker.

    Moderated by:

    Matthew Bonam
    Pharmaceutical Project Director, Intelligent Pharmaceuticals, AstraZeneca


    Tamara Howard, PhD

    VP, Global Sales and Patient Advocacy, Pulse Infoframe, Inc

    Jim Joyce

    CEO, HealthBeacon

  • 5:15 pm

  • Networking Reception

2019 Agenda

  • 8:30 am

  • Tea/Coffee

  • 9:00 am

  • Chair's Welcome & Opening Remarks

    Lode Dewulf, MD

    Chief Patient Officer, Servier

  • Advocacy and Patient Involvement in Clinical Research

  • 9:15 am

  • UCB and Parkinson's UK Working Together to Improve a Phase 2 Trial through Patient Involvement: A Pharma/Advocacy Case Study

    In 2018, UCB and Parkinson’s UK co-developed a workshop to enable the UCB research team to work together with people affected by Parkinson’s to discuss and develop a potential phase 2 clinical trial. The aim of the workshop was to better understand people’s thoughts on clinical trials and get feedback on key features of the potential trial to maximise appropriateness, acceptability and success.

    In this session, attendees will get a multistakeholder perspective on the collaboration, including:

    • How the workshop was co-developed
    • Benefits and impact of patient involvement
    • Key challenges and solutions during the collaboration
    • Practical tips for industry and patient organisation collaborations

    Natasha Ratcliffe, PhD

    Research Involvement Manager, Parkinson’s UK

    Elaine Sutcliffe
    Patient Advocate

    Kate Trenam

    UK Patient Advocacy and Policy Manager, UCB

  • 9:45 am

  • Panel Discussion: Best Practices for Pharma - Patient Advocacy Partnerships

    In this session we hear from pharma and advocacy representatives on:

    • Advocacy point of view on is what pharma is doing in clinical trials and medicines development truly patient centric?
    • How can advocacy groups work with the pharmaceutical industry to improve the clinical trial process?
    • How can advocacy get their foot in the door at pharma? Pharma’s advice.
    • How can pharma and advocacy better work together?
    • Explore the value of pharma reps spending time at an advocacy office to better understand what they do
    • How can this partnership impact patients and medicines development?


    Chris Macdonald
    Head of Research, Pancreatic Cancer UK


    Vanessa Pott

    Director, Patient Advocacy & Strategic PartnershipsMerck KGaA

    Natasha Ratcliffe, PhD

    Research Involvement ManagerParkinson’s UK

  • 10:15 am

  • Patient Advocacy: What Impact is it Having on Clinical Trials?

    • Industry experiences
    • Perspective on the pulse of the industry’s acceptance of patient input? Current barriers? Success stories?
    • A pulse on the impact?
    • Recommendations for all stakeholders moving forward

    Richard Stephens

    Patient/Consumer Lead, Chair Consumer Forum, NCRI


    Souzi Makri

    EUPATI Graduate and Patient Advocate

    Maria Piggin

    EUPATI Graduate and Patient advocate

  • 10:45 am

  • Networking Break

  • Pharma Case Studies Part 2: Applying Patient Engagement Initiatives and Demonstrating Impact

    Pharma and biotech share tangible examples of how patients were involved in clinical development and trial initiatives, how they implemented patient input, challenges faced and the outcomes to the initiatives as a result of including patients.

  • 11:30 am

  • Tell Me More: Sanofi Eliciting Patient Experience Data During Clinical Trials to Better Understand Patient-Perceived Benefits and Disadvantages of their Drugs

    In this session, we will hear from Dr Aude Roborel de Climens, PRO/COA Lead at Sanofi on how they capture patient experiences during clinical research and the benefit of collecting direct patient feedback. More specifically, she will present how they evaluate and analyze qualitatively and quantitatively individual patient experiences of benefits and risks of drugs during clinical trials to better understand and support clinical results and help future design of patient support programs.

    Aude Roborel de Climens, PhD

    Global PRO Lead, Sanofi

  • 11:50 am

  • How MSD is Integrating the Patient into their Protocol Design via Focus Groups

    In this session, Dr Luther Clark, Deputy Chief Patient Officer at MSD will walk the audience through how they integrated patient input in their protocol design process.

    • How and why did they decide on the focus group method
    • Why did they decide to outsource the recruitment
    • How they gained internal support and tips for doing so
    • Outline and demonstration of the “post-it” method
    • In reviewing timeline, cost and effectiveness, what would you do differently moving forward?

    Luther Clark
    Luther Clark, MD

    Deputy Chief Patient Officer, MSD

  • 12:10 pm

  • Smart Tools Enabling Patient Engagement: Results of Phase II Alzheimer Study

    In this session, Dr Hilde Vanaken – founder and leader of Janssen’s Integrated Smart Trial and Engagement Program (iSTEP) – will share how the phase II Alzheimer study was set up and patients (as well as site personnel & caregivers) were engaged on a personalized way through each step of the clinical trial. She will also give some overall recommendations of what they learned, corrective actions implemented, and next steps in this exciting journey.

    Hilde Vanaken, PhD

    Clinical Innovation Director, and eConsent Workstream Leader, Janssen and TransCelerate

  • 12:30 pm

  • Lunch

  • Patient Data and the Impact on Medicines Development

  • 1:30 pm

  • How do Patients Become Partners in the Sharing of Data to Advance Science?

    • How to encourage the sharing of suitably anonymized data to further medicines development for the benefit of patients?
    • What are the barriers/issues? Public mistrust of pharma? Language, medical records versus coded data?

    Natalie Banner
    Natalie Banner, PhD
    Understanding Patient Data Lead, Wellcome Trust

    Richard Stephens

    Patient/Consumer Lead, Chair Consumer Forum, NCRI

  • 2:00 pm

  • How to Return Data to Patients

    • How do patients want to receive their data?
    • What is the best method to share data with patients?
    • What “type” of data do patients want to receive?
    • How can Pharma work with patients to ensure they are disseminating the information that is important to them?

    Hilde Vanaken, PhD
    Clinical Innovation Director, and eConsent Workstream Leader, Janssen and Transcelerate

  • 2:30 pm

  • Networking Break

  • 2:45 pm

  • The Monetization of Patient Data and Its Impact on Medicines Development

    • Who are the players? Intermediaries, Regulators, Patients and Patient Organizations.
    • Is a new industry emerging?
    • Intermediaries: no social or patient interest, solely focused on $$. How do prevent entrepreneurs from monopolizing patient data?
    • Regulators: will they allows patients to monetize their data? What are the pros and cons from the perspective of the regulator?
    • Patient Organizations: Pharma want representative data from the members of these organizations. The members are not representative of the entire population. What is the true value of this data?

    Lode Dewulf, MD

    Chief Patient Officer, Servier

  • 3:15 pm

  • Kids Barcelona: How to Promote the Design and Development of Clinical Research Initiatives in Children at a pan-European Level

    The YPAG works together with the Clinical Trials Unit and the Innovation Department of Sant Joan de Déu Children’s Hospital (Barcelona). The main goal of the group is to include the voice of children and families in research, clinical trials and innovation projects. Kids Barcelona is one of the founder teams of eYPAGnet (European Young Person’s Advisory Groups Network). The common objectives of both initiatives is:

    • Improve the capacity to collaborate with the different stakeholders involved in the process of research and development of innovative drugs: academia, regulators, ethics committees, pharma companies, etc.
    • To accumulate experience in relation with therapies for children and moreover in the most innovative treatments.
    • Promote the design and development of clinical research initiatives in children at a European level.
    • Unify the curriculum for training programs and empowerment of young, expert patients.
    • Promote and lead the creation of new groups.

    In this session, hear about how the YPAG has impacted clinical research in Europe to date.

    Begoña Nafría
    Begoña Nafría 
    Patient Engagement in Research Coordinator, Hospital Sant Joan de Déu

  • 3:45 pm

  • Case Study between a Global Pharma and the NIHR to Develop and Pilot a Network to Connect Industry and Patients who are Willing and Able to Contribute at the Protocol Design Stage

    Meaningful patient and public involvement and engagement in clinical research design and delivery has been taking place in across England for the last 10 years, but it has often been regional or localised to specific institutions or disease areas. The ambition in the UK is to have a national framework with a clear route for life science companies to engage with relevant patients who can help shape clinical trial design and delivery at the earliest possible opportunity. This requires meaningful involvement at the protocol design stage, not just at the patient information leaflet stage. A project is underway in England which is paving the way to making this ambition a reality. This presentation will describe how the NIHR Clinical Research Network has collaborated with a global pharma giant to develop and pilot a network approach to connecting companies and patients who are willing and able to contribute at the protocol design stage. It will also include case study material describing how this new service is being rolled out now to a small number of select companies.

    Gareth Powell

    Business Development Officer, National Institute for Health Research (NIHR)

  • 4:15 pm

  • Conference Concludes