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Changes in patient
organisations - and how this
changes the medical world
Jan Geissler @jangeissler
CEO Patvocates; Co-founder CML Advocates Network;
WP co-leader IMI HARMONY; ePAG member EuroBloodNet; Advisor ESMO, ECCO, EHA
1
A common perception of what patient organisations are…
...and how they operate…
Patient activism from 1968
This is today’s reality of patient advocacy
Provide
patient support
Shape
health & regulatory
policy
Support and shape
research
Patient advocacy operates on
3 “horizontal” and 3 “vertical” levels
6
Patient support
Inform, support, navigate
Health policy
Influence health policy,
patient care
Research
Contribute in partnership with
clinicians, networks and industry
Local/
national
Information and support, national policy, awareness, campaigning, access (reimbursement)
Largest and (locally) most influential organisations operate within the national level.
European
EU policy / frameworks / systems, research collaboration,
access (systems, inequalities), evidence generation, inequalities
Strengthen, share, disseeminate, amplify work of national member organisations.
Global Some European-based organisations are Europe-resident global coalitions,
or members of global umbrellas or alliances
European patient advocacy community
(cancer, rare diseases, chronic diseases)
EUROPEAN
CANCER
PATIENT
COALITION:
>400 mostly national
patient organisations
WECAN:
Workgroup of leaders
of 22 European
Cancer patient
Advocacy
Networks
ALL CANCERS
RARE
DISEASES
RARE
CANCERS
HEMA-
TOLOGY
PAEDI-
ATRIC
European hematology patient community:
14 networks, >270 national organisations in Europe
Key activities of the umbrella organisations
• Developing patient information – most provide at least some basic disease
information, but some more than others. Often this is a domain/specialism of the
national organisations working in their field.
• Sharing best practices/facilitating networking – all do this.
• Provide a knowledge base/sharing educational and research resources – most do
this in varying degrees.
• Advocacy resources/toolkits – most do this.
• Involvement in research/regulatory projects, guideline/clinical practice
development – some do this more than others.
• Global/regional surveys – most carry out some form of patient experience
research.
• Healthcare professional education programmes – a small number provide such
learning.
• Awareness raising/public campaigns – most/all involved in this area of work.
European hematology patient community is
collaborating with key hematology societies and
initiatives
Successful collaboration with EHA
• EHA Fellowship Programme:
55 patient advocate leaders at 2018 congress
• EHA Capacity Building Programme
• Patient Advocacy Track sessions
2 until 2018, 3 from 2019
• EHA PO Workgroup (14 umbrellas)
• Patient Advocacy Booth
• Speaker at EHA Education Sessions 2017
on „Fertility preservation“
• Member of EHA European Affairs Committee
• EHA Patient Organisations Workgroup
11
Focus on unmet needs: Avoidable waste in the
production and reporting of research evidence
Chalmers I, Glasziou P. Lancet 2009;374:86–9
Over 30% of trial
interventions not sufficiently
described
Over 50% of planned study
outcomes not reported
Most new research not
interpreted in the context of
systematic assessment of
other relevant evidence
Unbiased and
usable report?
85% research waste = over $85 billion / year
Low priority questions
addressed
Important outcomes not
assessed
Clinicians and patients not
involved in setting research
agendas
Questions relevant
to clinicians &
patients?
Over 50% studies designed
without reference to
systematic reviews of
existing evidence
Over 50% of studies fail to
take adequate steps to
reduce biases, e.g.
unconcealed treatment
allocation
Appropriate
design and
methods?
Over 50% of studies never
published in full
Biased under-reporting of
studies with disappointing
results
Accessible
full
publication?
1 2 3 4
Data, not just
opinions:
Evidence-based
advocacy
Patient involvement in clinical trials in practice
Improving Patient Involvement in Medicines Research and Development: A Practical Roadmap. Geissler, Ryll, Leto, Uhlenhopp, Therapeutic Innovation & Regulatory Science (2017),
doi: 10.1177/2168479017706405, and at www.eupati.eu
Setting
research
priorities
Protocol
synopsis
Protocol
design
Trial
Steering
Committee
Information to
participants
Data & Safety
Monitoring
Committee
Investigator
meetings
Fundraising for
research
Practical
Considerations
Patient
Information
Informed
Consent
Ethics
Review Study
Reporting
Post-Study
Communication
Regulatory
Affairs
Health
Technology
Assessment
Research Design
and Planning
Research
Priorities
Research Conduct and
Operations
Market Authorization and
Post-approval
Contributions to IMI HARMONY
• One of Europe’s largest Big Data projects
• Builds a high-quality Big Data platform for AML, NHL, CLL,
Myeloma, pediatric leukemias, MDS
Currently >4.500 AML cases being uploaded
• Speed up drug development, access pathways and bench-to-
bedside process
• Harmonization of outcome measures and endpoint definitions
for HMs at European level
• Increase the application of omics data in clinical practice
Our role as patient organisations:
• Work package co-lead to involve patient orgs, regulators, HTA
• Input into research projects and legal/ethics framework
• Core outcome set defition (Delphi)
Community Advisory Boards, e.g. CML, Hematology, Myeloma
• Patient-run community advisory boards where patient organisations set the
agenda and invite stakeholders
• Two-way dialogue with researchers, academics, authorities and
pharmaceutical industry, to improve patients’ outcomes
• Address & tackle challenges that patients face
in accessing diagnosis, monitoring, treatment
and care
• Help develop patient-focused trials CAB
1st Hematology CAB
European Patients‘ Academy (EUPATI):
Patient Expert Training Course & web-based training:
www.eupati.eu
1. Discovery of Medicines
2. Pre-clinical Development
3. Clinical Development
4. Clinical Trials
5. Regulatory Affairs, Drug
Safety,
Pharmacovigilance
6. Health Technology
Assessment
What’s next?
• Patient advocacy is not a new fashion, it is becoming an essential part of medicine.
• While patient support is at the core of what we do,
we are increasingly shaping healthcare policy, regulation and research
• We are moving from anecdotes to data:
Evidence-based advocacy underlines our opinions on patients’ needs
• Successful studies will involve patient advocates in design and conduct to deliver
patient-relevant outcomes, e.g. in choice of endpoints, QoL instruments, feasibility,
patient information
• Set your priorities and partner with us! The hematology patient community is
strong, well-trained, and will make your work more impactful for patients
Involve us!
Jan Geissler
@jangeissler
jan@patvocates.net

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Changes in patient organisations - and how this changes the medical world

  • 1. Changes in patient organisations - and how this changes the medical world Jan Geissler @jangeissler CEO Patvocates; Co-founder CML Advocates Network; WP co-leader IMI HARMONY; ePAG member EuroBloodNet; Advisor ESMO, ECCO, EHA 1
  • 2. A common perception of what patient organisations are…
  • 3. ...and how they operate…
  • 5. This is today’s reality of patient advocacy Provide patient support Shape health & regulatory policy Support and shape research
  • 6. Patient advocacy operates on 3 “horizontal” and 3 “vertical” levels 6 Patient support Inform, support, navigate Health policy Influence health policy, patient care Research Contribute in partnership with clinicians, networks and industry Local/ national Information and support, national policy, awareness, campaigning, access (reimbursement) Largest and (locally) most influential organisations operate within the national level. European EU policy / frameworks / systems, research collaboration, access (systems, inequalities), evidence generation, inequalities Strengthen, share, disseeminate, amplify work of national member organisations. Global Some European-based organisations are Europe-resident global coalitions, or members of global umbrellas or alliances
  • 7. European patient advocacy community (cancer, rare diseases, chronic diseases) EUROPEAN CANCER PATIENT COALITION: >400 mostly national patient organisations WECAN: Workgroup of leaders of 22 European Cancer patient Advocacy Networks ALL CANCERS RARE DISEASES RARE CANCERS HEMA- TOLOGY PAEDI- ATRIC
  • 8. European hematology patient community: 14 networks, >270 national organisations in Europe
  • 9. Key activities of the umbrella organisations • Developing patient information – most provide at least some basic disease information, but some more than others. Often this is a domain/specialism of the national organisations working in their field. • Sharing best practices/facilitating networking – all do this. • Provide a knowledge base/sharing educational and research resources – most do this in varying degrees. • Advocacy resources/toolkits – most do this. • Involvement in research/regulatory projects, guideline/clinical practice development – some do this more than others. • Global/regional surveys – most carry out some form of patient experience research. • Healthcare professional education programmes – a small number provide such learning. • Awareness raising/public campaigns – most/all involved in this area of work.
  • 10. European hematology patient community is collaborating with key hematology societies and initiatives
  • 11. Successful collaboration with EHA • EHA Fellowship Programme: 55 patient advocate leaders at 2018 congress • EHA Capacity Building Programme • Patient Advocacy Track sessions 2 until 2018, 3 from 2019 • EHA PO Workgroup (14 umbrellas) • Patient Advocacy Booth • Speaker at EHA Education Sessions 2017 on „Fertility preservation“ • Member of EHA European Affairs Committee • EHA Patient Organisations Workgroup 11
  • 12. Focus on unmet needs: Avoidable waste in the production and reporting of research evidence Chalmers I, Glasziou P. Lancet 2009;374:86–9 Over 30% of trial interventions not sufficiently described Over 50% of planned study outcomes not reported Most new research not interpreted in the context of systematic assessment of other relevant evidence Unbiased and usable report? 85% research waste = over $85 billion / year Low priority questions addressed Important outcomes not assessed Clinicians and patients not involved in setting research agendas Questions relevant to clinicians & patients? Over 50% studies designed without reference to systematic reviews of existing evidence Over 50% of studies fail to take adequate steps to reduce biases, e.g. unconcealed treatment allocation Appropriate design and methods? Over 50% of studies never published in full Biased under-reporting of studies with disappointing results Accessible full publication? 1 2 3 4
  • 14. Patient involvement in clinical trials in practice Improving Patient Involvement in Medicines Research and Development: A Practical Roadmap. Geissler, Ryll, Leto, Uhlenhopp, Therapeutic Innovation & Regulatory Science (2017), doi: 10.1177/2168479017706405, and at www.eupati.eu Setting research priorities Protocol synopsis Protocol design Trial Steering Committee Information to participants Data & Safety Monitoring Committee Investigator meetings Fundraising for research Practical Considerations Patient Information Informed Consent Ethics Review Study Reporting Post-Study Communication Regulatory Affairs Health Technology Assessment Research Design and Planning Research Priorities Research Conduct and Operations Market Authorization and Post-approval
  • 15. Contributions to IMI HARMONY • One of Europe’s largest Big Data projects • Builds a high-quality Big Data platform for AML, NHL, CLL, Myeloma, pediatric leukemias, MDS Currently >4.500 AML cases being uploaded • Speed up drug development, access pathways and bench-to- bedside process • Harmonization of outcome measures and endpoint definitions for HMs at European level • Increase the application of omics data in clinical practice Our role as patient organisations: • Work package co-lead to involve patient orgs, regulators, HTA • Input into research projects and legal/ethics framework • Core outcome set defition (Delphi)
  • 16. Community Advisory Boards, e.g. CML, Hematology, Myeloma • Patient-run community advisory boards where patient organisations set the agenda and invite stakeholders • Two-way dialogue with researchers, academics, authorities and pharmaceutical industry, to improve patients’ outcomes • Address & tackle challenges that patients face in accessing diagnosis, monitoring, treatment and care • Help develop patient-focused trials CAB 1st Hematology CAB
  • 17. European Patients‘ Academy (EUPATI): Patient Expert Training Course & web-based training: www.eupati.eu 1. Discovery of Medicines 2. Pre-clinical Development 3. Clinical Development 4. Clinical Trials 5. Regulatory Affairs, Drug Safety, Pharmacovigilance 6. Health Technology Assessment
  • 18. What’s next? • Patient advocacy is not a new fashion, it is becoming an essential part of medicine. • While patient support is at the core of what we do, we are increasingly shaping healthcare policy, regulation and research • We are moving from anecdotes to data: Evidence-based advocacy underlines our opinions on patients’ needs • Successful studies will involve patient advocates in design and conduct to deliver patient-relevant outcomes, e.g. in choice of endpoints, QoL instruments, feasibility, patient information • Set your priorities and partner with us! The hematology patient community is strong, well-trained, and will make your work more impactful for patients

Editor's Notes

  1. The emergence of HIV activism happened in this rare and unique political constellation. During the Reagan and Thatcher administrations in the USA and the UK liberation movements of people of colour, women, and gays were all strengthening, and all of them were, to a certain extent, motivated by some degree of anger. Anger and frustration were, and often times are, the driving force behind some advocacy movements. Often raised in families of hippie counterculture, activists at the time were growing more and more conscious of their rights and possibilities. Emotions - feelings like anger, compassion, outrage and love, play an essential role in what patient activists do. Denying emotions when a mother fights for access to medication for a dying child, or when a young gay man does not want to die of AIDS at the age of 25, is myopic. Emotions are not ‘childish’, they are a part of life. Some doctors and some researchers consider that having emotions is unprofessional. And this denial of the validity of emotions, however unintentional, is used to castrate patient (or any civil) movements because it questions their ‘impartiality’ and their judgment-making capacities. Hence HIV activism was born, demanding acknowledgment of the immediate health crisis, but also the initiation of research and development into medicines to save the lives of thousands. By 1986, when AZT, the first effective compound against HIV was discovered, about 16,000 people were already suffering from AIDS in the USA.
  2. 12