2018 Agenda


  • 8:00 am

  • Registration & Breakfast

  • 8:45 am

  • Chair's Opening Remarks

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

  • 9:00 am

  • How to Get the Patient More Involved in Medicines Development: A Multi-stakeholder Point of View on What Good Patient Involvement Looks Like

    This multi-stakeholder panel will address:

    • How have best practices advanced in 2017?
    • What does good patient practice look like?
    • What approaches have been successful? What does this success look like?
    • Update on the quality of patient involvement in:
      • Drug development
      • Licensing
      • Reimbursement


    Tony Hoos, MD, PhD, MBA

    Head of Medical, Amgen Europe


    Sarah Deeley
    Clinical Country Lead UK & Ireland, Global Clinical Operations, Biogen Idec

    David Haerry
    David Haerry

    Patient Advocate, European AIDS Treatment Group (EATG)

    Bettina Ryll, PhD

    Founder, Melanoma Patient Network Europe

  • 9:40 am

  • How to Make Patient Involvement Systemic and Sustainable Throughout Medicines Development

    To prevent ticking off a box and to ensure that patient involvement is systemic and sustainable, we have to move into patient-centricity 2.0. What does this mean and how is this done so we can turn the patient voice into value, impact and benefit? This session demonstrates best practices from Hoffman La Roche, Melanoma Patient Network, Patient Focused Medicines Development and European Patients Forum.


    Bettina Ryll, PhD

    Founder, Melanoma Patient Network Europe


    nicola bedlington
    Nicola Bedlington

    Secretary General, European Patients Forum

    Nicholas Brooke

    Chief Executive Officer, Patient Focused Medicines Development (PFMD)

    Irmi Gallmeier
    Irmi Gallmeier

    Senior International Health Policy Leader, Patient Relations, F. Hoffman La Roche

  • 10:15 am

  • CISCRP's Global Assessment of Patient Perceptions of Clinical Research - A Stakeholders Call to Action

    Every two years since 2013, CISCRP has collaborated with key stakeholders to monitor trends and identify opportunities to better inform and engage the public and patients as partners in the clinical research enterprise. Topics addressed include:

    • Views on the risks, benefits, and safety of clinical research
    • An assessment of general awareness and comprehension
    • The impact of a well-informed healthcare professional on perceptions
    • The clinical trial volunteer experience

    In this session, Annick Anderson, Director of Research Services, reports on the 2017 Perceptions & Insights study findings and describes how industry stakeholders can leverage the insights to make a difference. For example:

    • Raising awareness and shaping perceptions among patients – a strategy for all stakeholders to engage local healthcare professionals in the process
    • Assessing the impact of educational initiatives on the value of clinical research – when to implement and who should lead?
    • Closing the loop to maintain patient engagement after participation with patient access to study results
    • Nullifying lost enrollment opportunities – better communicating why patients don’t qualify for a study

    Annick Anderson
    Annick Anderson

    Director, Research Service, CISCRP

  • 10:50 am

  • Networking Break

  • 11:20 am

  • Patient Engagement and Partnering Along the Medicine Life Cycle Continuum at UCB

    In this session, Dr Alexandra Moutet, Global Head of Patient Affairs at UCB, will walk the audience through how they have incorporated the patient into every stage of the medicine life cycle and how this has enhanced their development strategy. Key focus areas will include:

    • UCB’s roadmap to holistic patient engagement
    • Differentiating between patient engagement and patient experience
    • Reviewing tools used

    Alexandra Moutet
    Alexandra Moutet, MD

    Global Head of Patient Affairs, UCB

  • 11:45 am

  • How to Implement Patient Opinion Leader Advisory Boards in the Drug Development Continuum

    • What does it take to create a council?
    • Criteria for selecting the right patients
    • Understanding the role of the patient
    • Knowing the right patient for clinical and commercial programs
    • Factors for consideration

    Jennifer Kelly
    Jennifer Kelly

    VP, HealthiVibe LLC

  • 12:00 pm

  • Case Study: The Impact of a Patient Advisory Board at Santhera Pharmaceuticals

    In this session, Dr Vanessa dos Reis Ferreira, Patient Advocacy Manager at Santhera Pharmaceuticals, will walk the audience through how they implemented a first time patient advisory board and why it was so impactful.

    • The creation of the vision, buy-in and support across divisions
    • Challenges, obstacles and getting through them
    • Impact on company decisions after the patient advisory group
    • Preparation for and encouragement of honest feedback from patients
    • Recommendations

    Vanessa Ferreira
    Vanessa dos Reis Ferreira, PhD, MBA

    Head of Patient Advocacy Europe, Santhera Pharmaceuticals

  • 12:40 pm

  • Lunch

  • 1:40 pm

  • Patient Involvement in Medicines Development: How Partnering with Medical Research Charities is Key

    Medical research charities in the UK have been successfully integrating patient insight in to their activities for over 10 years. In this session, we will explore a shift in attitude towards pharmaceutical and medical research charity collaboration. We will share how charities have developed their processes to strike a balance of delivering effective research outcomes whilst ensuring principled and meaningful patient involvement and how these experiences, resources and processes can be used practically to support industry to put the needs and voice of patients at the centre of medicines development.

    Claire Nolan-2018-
    Claire Nolan

    Research Involvement Manager, Parkinson’s UK


    Chris Macdonald

    Research Involvement Manager, Arthritis Research UK

  • 2:15 pm

  • Patient Involvement: Is Pharma Satisfying the Demand?

    David Ewbank
    David Ewbank

    Partner, Executive Insight Healthcare Consultants

    Meike Wenzel
    Meike Wenzel

    Partner, Executive Insight Healthcare Consultants

  • 2:30 pm

  • Afternoon Networking Break

  • 3:00 pm

  • Tackling the Legal Barriers of Patient Involvement with Co-Designed Contracts and Agreements: a PFMD, MPE and WECAN Collaboration

    To overcome the legal barriers surrounding the partnership between patients, advocacy groups and pharma, PFMD, MPE and WECAN have collaborated to provide a framework, guidance and templates for reasonable agreements between patient organisations, patient advocates and the pharmaceutical industry.

    These contracts address the responsibilities of both parties, including:

    • Confidentiality
    • Intellectual property
    • Copyright
    • Data protection
    • Compensation

    In this session, hear from PFMD’s Chief Executive, Nicholas Brooke, on factors that were taken into consideration in developing the framework and the impact it can have on expediting and scaling up patient involvement in medicines development.

    Nicholas Brooke

    Chief Executive Officer, Patient Focused Medicines Development (PFMD)

  • 3:25 pm

  • The Impact of Young Research Ambassadors on Medicines Development

    Patient and public involvement in the design and delivery of clinical research is a key priority for the National Institute for Health Research. In this session, hear from the NIHR’s Patient and Public Involvement Priority Lead, Jenny Preston, on how her team and young people are making a difference to the design and delivery of pediatric research. 

    Jenny Preston, PhD

    Patient and Public Involvement Priority Lead, NIHR

  • 3:50 pm

  • Patient Point of View on the Progress of Patient Involvement

    This panel will include both patients and advocates in a review of how industry is doing when it comes to implementing patient involvement in their research and development initiatives. The panel will identify areas that need improvement.


    Alastair Kent

    Ambassador, Genetic Alliance UK


    Mathieu Boudes
    Mathieu Boudes, PhD

    Project Development & Strategic Alliances Senior Manager, EURODIS

    David Haerry
    David Haerry

    Patient Advocate, European AIDS Treatment Group (EATG)

  • 4:20 pm

  • Afternoon Tea

  • 5:30 pm

  • Day One Concludes


  • 8:00 am

  • Registration & Breakfast

  • 8:45 am

  • Chair's Opening Remarks

    Andrew Garvey

    Global Patient Advocacy Lead, GlaxoSmithKline

  • 9:00 am

  • What Does a Truly Patient-Centered Healthcare System Look Like in 5-10 Years?

    What would have to change to make a patient-centric healthcare system a reality? How can this be achieved given the huge resistance to change built into current systems? In this session, Alastair Kent, Director of Genetic Alliance UK, addresses:

    • New opportunities to intervene
    • Demographic change
    • Constrained funding right across Europe
    • The introduction of Expert Reference Networks
    • How we can work through this collaboratively

    Alastair Kent

    Director, Genetic Alliance UK

  • 9:30 am

  • Patient Engagement Metrics and Value

    This portion of the program will be a town hall-style session that addresses the following questions:

    • What are companies measuring? What metrics will be used to measure success?
    • What do these measurements reveal and what can we do about it?
    • Are these metrics different depending on the stakeholder? Why and how to we close that gap?
    • What and how to benchmark and determine market value?
    • How do we determine Return on Engagement? What does that really mean?
    • How are we moving forward in a team approach- regulators, etc – on policies, guidance?
    • What are some of the centralized sets of information about patient involvement?

    Nathalie Bere, MSc

    Patient Relations Coordinator, European Medicines Agency (EMA)

    Paula Wray
    Paula Wray, PhD

    Senior Public Involvement Manager, INVOLVE, NIHR

  • 10:00 am

  • A Metrics Case Study: How BMS Measured the Impact of Patient Engagement Clinical Trial Recruitment

    In this session, Pinal Patel, Strategic Recruitment Lead of Bristol-Myers Squibb, will walk the audience through how they have approached quantifying the outcome of patient engagement.

    • Tactics and pathways taken to partnering with advocacy groups
    • How measurement tools were implemented
    • Key performance indications
    • Outcomes

    Pinal Patel
    Pinal Patel

    Strategic Recruitment Lead, Bristol-Myers Squibb

  • 10:30 am

  • Empowering Patients to Make Informed Decisions

    Caroline Forkin
    Caroline Forkin, MBA

    Senior Director Medical Affairs, FIRECREST, ICON

    Hilde Vanaken, PhD
    R&D Operations Innovation Director/ eConsent Workstream Lead, Janssen / TransCelerate

  • 11:00 am

  • Networking Break

  • 11:40 am

  • An Update from EMA on their 1st Public Hearing with Patients, Care Givers, Healthcare Professionals and Academia on Risk Assessment

    • How to create a framework and method through public hearings to enrich scientific evidence and add value to the PRAC assessment
    • Goals, challenges and recommendations

    Nathalie Bere, MSc

    Patient Relations Coordinator, European Medicines Agency (EMA)

  • 12:15 pm

  • Patient Views on Mobile Technology in Clinical Trials: Clinical Trials Transformation Initiative’s Stakeholder Perceptions Project

    In this session, hear from cancer survivor and patient advocate, Cindy Geoghegan, who will share findings from a multi-stakeholder project undertaken by the Clinical Trials Transformation Initiative to better understand patient perspectives on mobile in clinical trials. With digital and mobile frameworks being increasingly incorporated into clinical trial design and operations, Cindy highlights the importance of the patient’s role in sharing insights into the appropriate use and need for technology in a patient’s daily routine. Topics addressed include:

    • Potential impacts of mobile on participant experiences in clinical trials
    • Patient willingness to share personal health data 
    • Important attributes for designing trials that address patient preferences and expectations
    • Implications for the research enterprise

    Cindy Geoghegan

    Patient Advocate and Cancer Survivor

  • 12:45 pm

  • Lunch

  • 2:00 pm

  • Empowering the Public to Sign Up for Clinical Research – the UK Clinical Trials Gateway

    Clare Shaw
    Clare Shaw, PhD

    Join Dementia Research Delivery Manager, NIHR

  • 2:30 pm

  • Panel Discussion: Where Does Industry See Patient Involvement in 10 Years?

    • How can we bridge the gap between industry, advocacy, patients and regulatory?
    • How can industry and patients better collaborate?
    • How does industry know what patients want?
    • Solutions for any outstanding barriers: legal, cultural, access etc.


    Richard Stephens

    Patient/ Consumer Lead, Chair Consumer Forum, National Cancer Research Institute


    Liz Clarke
    Liz Clark

    VP, Medical Affairs, Norgine

    Paul Robinson
    Paul Robinson

    Executive Director, Patient Innovation, MSD

    Hilde Vanaken, PhD
    R&D Operations Innovation Director/ eConsent Workstream Lead, Janssen / TransCelerate

    Graham Wylie, MB BS
    CEO, Medical Research Network

  • 3:15 pm

  • Conference Concludes