Preliminary Draft Programme EPF Congress - EPF Congress 2019
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Preliminary Draft Programme
EPF Congress
12-14 November 2019
Crowne Plaza Le Palace, Place Rogier, Brussels
Day 1: 12 November
Fringe / pre-congress meetings
8:30 – 12:30 Hackathon – side event
How to enable patient involvement while managing diverge interests and relationships
with stakeholders?
The hackathon will focus on the problem of enabling meaningful patient involvement
while managing the different and sometimes diverging interests of health stakeholders
and avoiding conflicts of interest. It will involve multi-disciplinary teams, led by patient
representatives. Participants will volunteer and be selected according to criteria agreed by
the Advisory Board. The tentative title for the Hackathon is: “Enabling Patient Involvement
while managing interests and relationships with multiple stakeholders.”
At the end of the hackathon participants will have better understanding of the conflict of
interest issue from the prospective of all stakeholders. Thanks to the hackathon
participant will:
• Increase trust between key actors;
• Develop collaborative solutions and safeguards to drive and nurture meaningful
patient involvement, manage interests and avoid conflicts of interest.
All participants will be evaluated by a jury, which will feature Adrian van den Hoven
(Director General, Medicines for Europe), June Raine (Director of Vigilance and Risk
Management at the MHRA of the UK) and Miklos Szocska (Former Secretary of State for
Health in Hungary).
Announcement of Hackathon winners by the Jury during the Welcome reception at 19:00.
13:00 Welcoming lunch14:00 Plenary session: Grand Opening of the Congress
Introduction from Mair Elliott and Zoltan Aszalos (Master of Ceremonies).
Welcoming address
• Marco Greco, EPF President
Welcome from the European Commission
• European Commission representative
Welcome from the Finnish Presidency
• To be confirmed
Keynote: Why patient involvement?
• Cees Smit, patient representative
• Sara Riggare, patient representative
15:30 Coffee break
16:00-17:30 “Patient involvement: presenting the evidence”
• Dr Alf Collins, NHS England
Followed by panel discussion: “Different perspectives – one vision” moderated by Mair
Elliott and Zoltan Aszalos
• Hans Henri Kluge, WHO European regional office
• Elena Petelos, European Forum for Primary Care
• Jean-Christophe Tellier, EFPIA
• Cees Smit, patient representative
• Sara Riggare, patient representative
• Alf Collins, Clinical Director at NHS England
Interactive discussion with the audience
Wrap-up of session – Mair Elliot, Zoltan Aszalos and Usman Khan
18:30 Welcome reception
Announcement of Hackathon winners
Day 2: 13 November
09:30 Recap day 1 & intro to day 2 – Mair Elliot and Zoltan Aszalos
Keynote: Ensuring equity, inclusivity and diversity of the patients’ voice
• Prof. em. Jan De Maeseneer, Ghent University
Followed by panel discussion moderated by Nicola Bedlington, EPF Special Adviser
• Chris Roberts, Alzheimer Europe
• Freek Spinnewijn, FEANTSA/EPHA
• Patient representative
• Representative from EU Fundamental Rights Agency
Introduction to the parallel working sessions – Mair Elliot and Zoltan Aszalos
10:45 Coffee break
211:15 Parallel working sessions
Six parallel working sessions exploring the “how-to” and the “building blocks” of patient
involvement in different health settings in a solutions-oriented manner. Sessions will
feature innovative case studies and explore how to scale-up and move beyond isolated
examples of great practice to ensuring patient involvement becomes the new normal,
what challenges may need to be overcome, and how.
Participants will gain learnings, information, tools and materials that will help them drive
meaningful change in their own work.
Sessions will be facilitated and documented and will contribute to the development of a
patient-led EPF Framework on Meaningful Patient Involvement in Health Systems.
See page 4 for a description of the topics of the parallel sessions.
13:15 Networking lunch
14.30 Parallel sessions continued
Focus on distilling concrete learnings and tools from the sessions for participants take
into their real-life environments.
16.00 Coffee break
16.30 Final plenary “Culture change and leadership”
Brief feedback from the parallel sessions
• Usman Khan, Zoltan Aszalos, Mair Elliott
Keynote: “Culture change and leadership”
• Marc Boutin, National Health Council (US)
Wrap-up of the session: Mair Elliot, Zoltan Aszalos and Usman Khan
17:30 Break and networking space
19:30 Congress Dinner
Day 3: 14 November
09:30 Plenary session: “Patients as teachers – what can patients teach professionals?”
How can and should patients’ involvement shape the education and the continuous
professional development of our future healthcare professionals? What can patient
involvement bring to the education of other professionals, e.g. health managers,
researchers, industry and regulators?
Moderated by Matthew May, EUPATI Programme Coordinator
Case studies of innovative practice followed by discussion with panel.
• Patient organisation perspective
• Michel Ballieu, BioMed Alliance
• Juan Garcia, European Medicines Agency
• Medical student perspective (TBC)
• Academic/educator perspective (TBC)
311.00 Coffee break
11:30 Closing plenary session
• Usman Khan, Mair Elliott, Zoltan Aszalos
“Why health systems must start delivering for and with patients”
• Stefano Scarpetta, Director Employment, Labour and Social Affairs, OECD
interviewed by Susanna Palkonen, PACT President
European legislator perspective – what action will the Parliament take?
• European Parliament representative (TBC)
Call for affirmation of commitment from participants to move forward on patient
involvement in their own environments
• Elisabeth Kasilingham, EPF Board Member and Borislava Ananieva, EPF Youth
Group
Brief overview of main messages from the three days – Usman Khan, Mair Elliot, Zoltan
Aszalos
Closing of the Congress
• Marco Greco, EPF President
13.15 Lunch and departures
4Parallel working sessions
1. Measuring impact of patient involvement
The patient community is a strong advocate for patient involvement in many aspects of healthcare such as
service designing, research and development and HTA; this is because patients, as final users, are very much
aware of what can be improved in healthcare systems.
Nevertheless, asserting that patient involvement is needed to pinpoint the “added therapeutic value” of new
technologies and treatments, always triggers the question of its impact, if any. For many, the issue of
measuring impact is raised frequently, as the facilitation of patient involvement comes with investments,
setting up of programmes and infrastructures.
Our starting point is that value and value for money can be measured by the impact of patient involvement
on decision making about pricing, reimbursement and disinvestment, assuming that tangible proof is needed.
The act of providing accurate value assessment can be considered itself as a value of patient involvement.
Despite the identified need for evaluation of the impact of patient involvement, patient involvement is
neither tracked nor evaluated in a systematic or in a standardised manner.
In the second part of the session we will try to untangle the knots that obstruct the systematic evaluation of
patient involvement. We will explore studies and experiences from HTA, and other fields to show the
potential of patient involvement in contributing to accurate value assessment, including value for money, for
healthcare interventions. This can support health systems’ sustainability and help reduce wasteful spending.
2. How should healthcare systems involve patients in evaluating their performance?
Health systems’ performance can be assessed by evaluating to what extent they deliver the outcomes and
experiences that matter most to patients. This session takes a health systems perspective based on EPF’s
work with patients on defining “quality” healthcare, and links to current initiatives on developing patient-
centred healthcare quality indicators together with patients.
3. Patients as partners in research: making co-production “the new normal“
Patients are increasingly becoming not only research subjects but also co-researchers, and even drivers of
research. Research with patients, driven by patients’ real-life unmet needs and priorities, can deliver high-
value, sustainable solutions. This session will explore the opportunities of doing research “with” as well as
“for” patients, looking at innovative examples from therapeutic research and development, but also at a
wider context of health and the setting of research priorities together with patients. The session is developed
in collaboration with BMJ. Presentation or case study of the James Lind Alliance priority-setting partnership?
4. Designing better healthcare services with patients
This session will look at inspiring and educational case studies, exploring the process, principles, benefits and
pitfalls of co-designing a healthcare service local with those who use it. You will have an opportunity to learn
from the perspective of the patients and healthcare users, as well as professionals and healthcare managers.
55. How to ensure digital health brings real-life benefits for patients?
This session will explore how patient involvement can be embedded in digital health as a driver for change,
towards harnessing digital technologies for the benefit of patients and society. Digitalisation in healthcare
has potential to transform care into a much more participatory process. Tools should start from the needs of
healthcare users and be developed with the users, to ensure technology actually facilitates participatory,
person-centred healthcare and leads to better outcomes for patients, and better value for society.
6. Patient safety – how can patients and families help improve it?
Patients and patient organisations play a key role in advocating for safer care, which should be promoted
through empowerment and participation at all levels. Research suggests that “lay expertise” could be the
backbone of patient safety, including in acute illness, but there are barriers – such as patients’ concerns not
being taken seriously, persistent hierarchical culture, and the disempowering nature of many healthcare
settings. This session will build on previous work done by EPF to identify ways forward towards achieving a
patient safety culture where patients’ experiences are valued, and their participation welcomed.
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