The Networked Patient Group: How technology changes the face of patient advocacyjangeissler
"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016
Is there patient involvement in HTA? Can patients influence HTA decision making?Kathi Apostolidis
Is HTA purely technical?
drivers for patient involvement in HTA
patient participation or tokenism
medicines do not reach patients due to delays in HTA evaluation
need for harmonized HTA
How Effective is the Public in Influencing HTA Decisions?Kathi Apostolidis
Patients should be involved in HTA process to assure a robust process that embraces patients' needs, preferences, perspectives. ECPC-European Cancer Patient Coalition leverages on European Institutions for a solution to the timely authorization and reimbursement of innovative cancer medicines
The Networked Patient Group: How technology changes the face of patient advocacyjangeissler
"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016
Is there patient involvement in HTA? Can patients influence HTA decision making?Kathi Apostolidis
Is HTA purely technical?
drivers for patient involvement in HTA
patient participation or tokenism
medicines do not reach patients due to delays in HTA evaluation
need for harmonized HTA
How Effective is the Public in Influencing HTA Decisions?Kathi Apostolidis
Patients should be involved in HTA process to assure a robust process that embraces patients' needs, preferences, perspectives. ECPC-European Cancer Patient Coalition leverages on European Institutions for a solution to the timely authorization and reimbursement of innovative cancer medicines
Patients at the Centre for Health Research – Patient, Carer and Public Invol...Nowgen
"Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
A very important result from the EUPATI project was the development, broad consultation and final release of guidances on the best approach to interaction of patients with pharmaceutical industry-led medicines R&D, regulatory authorities, ethics committees and HTA agencies. This webinar focuses on the Patient Involvement in Industry-led R&D guidance document
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
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EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...EUPATI
"Patient involvement in medicines R&D: Bringing to life with EUPATI", presented by Jan Geissler, EUPATI Director, at the EUPATI 2013 Conference on 19 April 2013
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...EUPATI
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UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017ipposi
Medical students taking the elective course in rare diseases are provided a number of patient perspectives throughout the module. This is what IPPOSI presented in 2017.
Tripartite dimension of interaction of patients, regulators and industry (Jan...jangeissler
Tripartite dimension of interaction of patients, regulators and industry, presented by Jan Geissler as a scene-setting presentation at the EUPATI Workshop on the interaction of patients, regulators and industry on 20 July 2016 in Berlin
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internetpatvocates
"How Patient (Advocates) discuss Clinical Research on the Internet", presented by Jan Geissler (Twitter @jangeissler) at DIA Clinical Forum in The Hague on 9 Oct 2012.
Patients at the Centre for Health Research – Patient, Carer and Public Invol...Nowgen
"Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
A very important result from the EUPATI project was the development, broad consultation and final release of guidances on the best approach to interaction of patients with pharmaceutical industry-led medicines R&D, regulatory authorities, ethics committees and HTA agencies. This webinar focuses on the Patient Involvement in Industry-led R&D guidance document
Patient involvement in clinical research and long term conditions -what can b...Nowgen
"Patient involvement in clinical research and long term conditions -what can be achieved by working in partnership", presented by Dr. J. Paul Schofield, ABPI, at EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI
"Patient involvement in medicines R&D: Here we are, and where we want to be in 2020" by Nicola Bedlington, Executive Director of European Patients' Forum and Coordinator of the EUPATI project, at the EUPATI 2013 Conference on 19 April 2013.
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...EUPATI
"Patient involvement in medicines R&D: Bringing to life with EUPATI", presented by Jan Geissler, EUPATI Director, at the EUPATI 2013 Conference on 19 April 2013
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...EUPATI
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involvement in Medicines R&D, “Bring to life with EUPATI examples”, by Niels Westergaard, PhD, DSc Biopeople, University of Copenhagen, Denmark
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017ipposi
Medical students taking the elective course in rare diseases are provided a number of patient perspectives throughout the module. This is what IPPOSI presented in 2017.
Tripartite dimension of interaction of patients, regulators and industry (Jan...jangeissler
Tripartite dimension of interaction of patients, regulators and industry, presented by Jan Geissler as a scene-setting presentation at the EUPATI Workshop on the interaction of patients, regulators and industry on 20 July 2016 in Berlin
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internetpatvocates
"How Patient (Advocates) discuss Clinical Research on the Internet", presented by Jan Geissler (Twitter @jangeissler) at DIA Clinical Forum in The Hague on 9 Oct 2012.
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...patvocates
"European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in empowering patients on medical R&D": Presentation by Jan Geissler (Twitter @jangeissler) at the Belgian Association of Clinical Research Professionals (ACRP.be) meeting on 25 Oct 2012
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...patvocates
Patient Advocates in Cancer Research: European Patients’ Perspective, presented by Jan Geissler (Twitter @jangeissler) at ISOQOL 19th Annual Conference, Budapast, 26 Oct 2012
Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...jangeissler
A snapshot of EUPATI: Why the educated patient is so vital to success in clinical trials - Jan Geissler - EUPATI Director - presented at DIA EuroMeeting on 6 March 2013 in Amsterdam
EUPATI’s framework on Informing the “health-interested” public about medicine...Nowgen
"EUPATI's framework on Informing the “health-interested” public objectively and comprehensively about medicines R&D", presented by Jan Geissler at the EUPATI 2014 Workshop in Warsaw
Geneva Pharma Forum on Pharmacovigilance: Partnering for
Patient Safety (Geneva, 20 November 2012), Jeremiah Mwangi, Director, Policy and External Affairs, IAPO
Patient Engagement in Health Economic and Outcomes Research: Current and Future ISPOR Initiatives, presentation from the ISPOR 20th International meeting Philadelphia, May 2015, by the Patient Centered Special Interest Group
EU Clinical Trials Regulation - IPPOSI perspectiveipposi
IPPOSI CEO, Dr Derick Mitchell delivered a presentation on the EU Clinical Trials Regulation from the patients' perspective at the 20th International Conference on Pharmaceutical Medicine, Athens, Greece.
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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. CONFLICT OF INTEREST
DISCLOSURES
Advisory roles and consultancy to Amgen, Bayer, Biomarin, Grünenthal,
Janssen, Novartis, Pfizer, Roche, Servier, Takeda, UCB
Contributions to IMI-funded consortium projects HARMONY and EUPATI
by EFPIA companies
2
6. This is today’s reality of patient advocacy
Provide
patient support
Shape
health & regulatory
policy
Support and shape
research
7. Patient advocacy operates on
3 “horizontal” and 3 “vertical” levels
7
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
8. 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
10. 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.
12. 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
12
13. 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
15. 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
16. 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)
17. 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
18. 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
19. 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
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.