SlideShare a Scribd company logo
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
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
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
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
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
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
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

More Related Content

What's hot

Patients at the Centre for Health Research – Patient, Carer and Public Invol...
Patients at the Centre for Health Research –  Patient, Carer and Public Invol...Patients at the Centre for Health Research –  Patient, Carer and Public Invol...
Patients at the Centre for Health Research – Patient, Carer and Public Invol...
Nowgen
 
Webinar: Guidance on Industry-led R&D
Webinar: Guidance on Industry-led R&DWebinar: Guidance on Industry-led R&D
Webinar: Guidance on Industry-led R&D
Hibernia College
 
Patient involvement in clinical research and long term conditions -what can b...
Patient involvement in clinical research and long term conditions -what can b...Patient involvement in clinical research and long term conditions -what can b...
Patient involvement in clinical research and long term conditions -what can b...
Nowgen
 
Engagement within the new system
Engagement within the new systemEngagement within the new system
Engagement within the new system
PM Society
 
The way forward for greater manchester academic health science network ahsn
The way forward for greater manchester academic health science network ahsnThe way forward for greater manchester academic health science network ahsn
The way forward for greater manchester academic health science network ahsn
PM Society
 
EUPATI Launch Meeting - Jan Geissler
EUPATI Launch Meeting - Jan GeisslerEUPATI Launch Meeting - Jan Geissler
EUPATI Launch Meeting - Jan Geissler
jangeissler
 
Communication & social media
Communication & social media Communication & social media
Communication & social media
EUPATI
 
0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate
0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate
0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate
Workgroup of European Cancer Patient Advocacy Networks
 
Juliet Moritz premiere research crdn summit 2017
Juliet Moritz premiere research crdn summit 2017Juliet Moritz premiere research crdn summit 2017
Juliet Moritz premiere research crdn summit 2017
CamRARE Disease Network
 
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...
EUPATI
 
Natalie Rebeyev rare disease nurse network crdn summit 2017
Natalie Rebeyev rare disease nurse network crdn summit 2017Natalie Rebeyev rare disease nurse network crdn summit 2017
Natalie Rebeyev rare disease nurse network crdn summit 2017
CamRARE Disease Network
 
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...
EUPATI
 
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...
EUPATI
 
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017
ipposi
 
EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)
EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)
EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)
Nowgen
 
Moving forward with the greater manchester formulary
Moving forward with the greater manchester formularyMoving forward with the greater manchester formulary
Moving forward with the greater manchester formulary
PM Society
 
G1 report from breakout group 1
G1 report from breakout group 1G1 report from breakout group 1
G1 report from breakout group 1
EUPATI
 
Cadth 2015 e6 husereau rwe cadth
Cadth 2015 e6 husereau rwe cadthCadth 2015 e6 husereau rwe cadth
Cadth 2015 e6 husereau rwe cadth
CADTH Symposium
 
G2 report from breakout group 2
G2 report from breakout group 2G2 report from breakout group 2
G2 report from breakout group 2
EUPATI
 
In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017
In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017
In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017
ipposi
 

What's hot (20)

Patients at the Centre for Health Research – Patient, Carer and Public Invol...
Patients at the Centre for Health Research –  Patient, Carer and Public Invol...Patients at the Centre for Health Research –  Patient, Carer and Public Invol...
Patients at the Centre for Health Research – Patient, Carer and Public Invol...
 
Webinar: Guidance on Industry-led R&D
Webinar: Guidance on Industry-led R&DWebinar: Guidance on Industry-led R&D
Webinar: Guidance on Industry-led R&D
 
Patient involvement in clinical research and long term conditions -what can b...
Patient involvement in clinical research and long term conditions -what can b...Patient involvement in clinical research and long term conditions -what can b...
Patient involvement in clinical research and long term conditions -what can b...
 
Engagement within the new system
Engagement within the new systemEngagement within the new system
Engagement within the new system
 
The way forward for greater manchester academic health science network ahsn
The way forward for greater manchester academic health science network ahsnThe way forward for greater manchester academic health science network ahsn
The way forward for greater manchester academic health science network ahsn
 
EUPATI Launch Meeting - Jan Geissler
EUPATI Launch Meeting - Jan GeisslerEUPATI Launch Meeting - Jan Geissler
EUPATI Launch Meeting - Jan Geissler
 
Communication & social media
Communication & social media Communication & social media
Communication & social media
 
0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate
0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate
0304 Zack Pemberton - Influencing reimbursement decisions as a patient advocate
 
Juliet Moritz premiere research crdn summit 2017
Juliet Moritz premiere research crdn summit 2017Juliet Moritz premiere research crdn summit 2017
Juliet Moritz premiere research crdn summit 2017
 
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...
EUPATI 2013 Conference: Vision on Patient involvement in medicines R&D: Here...
 
Natalie Rebeyev rare disease nurse network crdn summit 2017
Natalie Rebeyev rare disease nurse network crdn summit 2017Natalie Rebeyev rare disease nurse network crdn summit 2017
Natalie Rebeyev rare disease nurse network crdn summit 2017
 
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...
EUPATI 2013 Conference: Patient involvement in medicines R&D: Bringing to li...
 
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...
EUPATI 2013 Conference: Building Knowledge & Competences for Patients’ Involv...
 
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017
UCD Rare Disease Module 2017 - Dr Derick Mitchell - March 28th 2017
 
EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)
EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)
EUPATI – EU: An overview (Eibhlin Mulroe, EUPATI / IPPOSI)
 
Moving forward with the greater manchester formulary
Moving forward with the greater manchester formularyMoving forward with the greater manchester formulary
Moving forward with the greater manchester formulary
 
G1 report from breakout group 1
G1 report from breakout group 1G1 report from breakout group 1
G1 report from breakout group 1
 
Cadth 2015 e6 husereau rwe cadth
Cadth 2015 e6 husereau rwe cadthCadth 2015 e6 husereau rwe cadth
Cadth 2015 e6 husereau rwe cadth
 
G2 report from breakout group 2
G2 report from breakout group 2G2 report from breakout group 2
G2 report from breakout group 2
 
In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017
In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017
In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017
 

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

Tripartite dimension of interaction of patients, regulators and industry (Jan...
Tripartite dimension of interaction of patients, regulators and industry (Jan...Tripartite dimension of interaction of patients, regulators and industry (Jan...
Tripartite dimension of interaction of patients, regulators and industry (Jan...
jangeissler
 
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the InternetJan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet
patvocates
 
Alpha One Conference - IPPOSI
Alpha One Conference - IPPOSIAlpha One Conference - IPPOSI
Alpha One Conference - IPPOSI
ipposi
 
European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in ...
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...
European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in ...
patvocates
 
Advocacy and the cancer patient viewpoint
Advocacy and the cancer patient viewpointAdvocacy and the cancer patient viewpoint
Advocacy and the cancer patient viewpoint
IMSHealthRWES
 
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...
patvocates
 
EPIS meeting - Dr Derick Mitchell - October 2017
EPIS meeting - Dr Derick Mitchell - October 2017EPIS meeting - Dr Derick Mitchell - October 2017
EPIS meeting - Dr Derick Mitchell - October 2017
ipposi
 
Jornadas #PatientInHTA · Tamas Bereczky
Jornadas #PatientInHTA · Tamas BereczkyJornadas #PatientInHTA · Tamas Bereczky
Jornadas #PatientInHTA · Tamas Bereczky
Instituto Aragonés de Ciencias de la Salud - IACS
 
Introduction to the workshop and EUPATI update
Introduction to the workshop and EUPATI updateIntroduction to the workshop and EUPATI update
Introduction to the workshop and EUPATI update
EUPATI
 
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...A snapshot of EUPATI: Why the educated patient is so vital to success in clin...
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...
jangeissler
 
EUPATI’s framework on Informing the “health-interested” public about medicine...
EUPATI’s framework on Informing the “health-interested” public about medicine...EUPATI’s framework on Informing the “health-interested” public about medicine...
EUPATI’s framework on Informing the “health-interested” public about medicine...
Nowgen
 
PowerPoint Presentation +.ppt
PowerPoint Presentation +.pptPowerPoint Presentation +.ppt
PowerPoint Presentation +.ppt
Shaan73
 
1 engaging with ema methodology and support
1 engaging with ema methodology and support1 engaging with ema methodology and support
1 engaging with ema methodology and support
EURORDIS Rare Diseases Europe
 
Engaging with EMA methodology
Engaging with EMA methodology Engaging with EMA methodology
Engaging with EMA methodology
EURORDIS Rare Diseases Europe
 
Pharmacovigilance: Partnering for Patient Safety
Pharmacovigilance: Partnering for Patient SafetyPharmacovigilance: Partnering for Patient Safety
Patient involvement
Patient involvementPatient involvement
Patient involvement
EURORDIS Rare Diseases Europe
 
0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles
0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles
0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles
Workgroup of European Cancer Patient Advocacy Networks
 
2010 11 13 european cme forum jan geissler 1.5
2010 11 13 european cme forum jan geissler 1.52010 11 13 european cme forum jan geissler 1.5
2010 11 13 european cme forum jan geissler 1.5
jangeissler
 
F3 patient engagement-2015philadelphia
F3 patient engagement-2015philadelphiaF3 patient engagement-2015philadelphia
F3 patient engagement-2015philadelphia
Todd Berner MD
 
EU Clinical Trials Regulation - IPPOSI perspective
EU Clinical Trials Regulation - IPPOSI perspectiveEU Clinical Trials Regulation - IPPOSI perspective
EU Clinical Trials Regulation - IPPOSI perspective
ipposi
 

Similar to Changes in patient organisations - and how this changes the medical world (20)

Tripartite dimension of interaction of patients, regulators and industry (Jan...
Tripartite dimension of interaction of patients, regulators and industry (Jan...Tripartite dimension of interaction of patients, regulators and industry (Jan...
Tripartite dimension of interaction of patients, regulators and industry (Jan...
 
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the InternetJan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet
Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet
 
Alpha One Conference - IPPOSI
Alpha One Conference - IPPOSIAlpha One Conference - IPPOSI
Alpha One Conference - IPPOSI
 
European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in ...
European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...European Patients’ Academy on Therapeutic Innovation:Shifting paradigms in ...
European Patients’ Academy on Therapeutic Innovation: Shifting paradigms in ...
 
Advocacy and the cancer patient viewpoint
Advocacy and the cancer patient viewpointAdvocacy and the cancer patient viewpoint
Advocacy and the cancer patient viewpoint
 
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...
Patient Advocates in Cancer Research: European Patients’ Perspective - Jan ...
 
EPIS meeting - Dr Derick Mitchell - October 2017
EPIS meeting - Dr Derick Mitchell - October 2017EPIS meeting - Dr Derick Mitchell - October 2017
EPIS meeting - Dr Derick Mitchell - October 2017
 
Jornadas #PatientInHTA · Tamas Bereczky
Jornadas #PatientInHTA · Tamas BereczkyJornadas #PatientInHTA · Tamas Bereczky
Jornadas #PatientInHTA · Tamas Bereczky
 
Introduction to the workshop and EUPATI update
Introduction to the workshop and EUPATI updateIntroduction to the workshop and EUPATI update
Introduction to the workshop and EUPATI update
 
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...A snapshot of EUPATI: Why the educated patient is so vital to success in clin...
A snapshot of EUPATI: Why the educated patient is so vital to success in clin...
 
EUPATI’s framework on Informing the “health-interested” public about medicine...
EUPATI’s framework on Informing the “health-interested” public about medicine...EUPATI’s framework on Informing the “health-interested” public about medicine...
EUPATI’s framework on Informing the “health-interested” public about medicine...
 
PowerPoint Presentation +.ppt
PowerPoint Presentation +.pptPowerPoint Presentation +.ppt
PowerPoint Presentation +.ppt
 
1 engaging with ema methodology and support
1 engaging with ema methodology and support1 engaging with ema methodology and support
1 engaging with ema methodology and support
 
Engaging with EMA methodology
Engaging with EMA methodology Engaging with EMA methodology
Engaging with EMA methodology
 
Pharmacovigilance: Partnering for Patient Safety
Pharmacovigilance: Partnering for Patient SafetyPharmacovigilance: Partnering for Patient Safety
Pharmacovigilance: Partnering for Patient Safety
 
Patient involvement
Patient involvementPatient involvement
Patient involvement
 
0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles
0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles
0103 Ananda Plate - Welcome to the WECAN Academy - and advocacy principles
 
2010 11 13 european cme forum jan geissler 1.5
2010 11 13 european cme forum jan geissler 1.52010 11 13 european cme forum jan geissler 1.5
2010 11 13 european cme forum jan geissler 1.5
 
F3 patient engagement-2015philadelphia
F3 patient engagement-2015philadelphiaF3 patient engagement-2015philadelphia
F3 patient engagement-2015philadelphia
 
EU Clinical Trials Regulation - IPPOSI perspective
EU Clinical Trials Regulation - IPPOSI perspectiveEU Clinical Trials Regulation - IPPOSI perspective
EU Clinical Trials Regulation - IPPOSI perspective
 

More from jangeissler

Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten
Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten
Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten
jangeissler
 
Don't just talk about patient centricity - put meaningful patient engagement ...
Don't just talk about patient centricity - put meaningful patient engagement ...Don't just talk about patient centricity - put meaningful patient engagement ...
Don't just talk about patient centricity - put meaningful patient engagement ...
jangeissler
 
CML: A tiger in the cage? A (European) perspective on CML disease management
CML: A tiger in the cage? A (European) perspective on CML disease managementCML: A tiger in the cage? A (European) perspective on CML disease management
CML: A tiger in the cage? A (European) perspective on CML disease management
jangeissler
 
Sicht der Patienten auf Real World Data, Register und Versorgungsdaten
Sicht der Patienten auf Real World Data, Register und VersorgungsdatenSicht der Patienten auf Real World Data, Register und Versorgungsdaten
Sicht der Patienten auf Real World Data, Register und Versorgungsdaten
jangeissler
 
Überblick der Aktivitäten von Leukämie-Online und CML Advocates Network
Überblick der Aktivitäten von Leukämie-Online und CML Advocates NetworkÜberblick der Aktivitäten von Leukämie-Online und CML Advocates Network
Überblick der Aktivitäten von Leukämie-Online und CML Advocates Network
jangeissler
 
Andreas Willer - Rehabilitation für Patienten mit CML
Andreas Willer - Rehabilitation für Patienten mit CMLAndreas Willer - Rehabilitation für Patienten mit CML
Andreas Willer - Rehabilitation für Patienten mit CML
jangeissler
 
Umfrage zur Therapiefreien Remission (TFR) der CML-Patientengemeinschaft
Umfrage zur Therapiefreien Remission (TFR) der CML-PatientengemeinschaftUmfrage zur Therapiefreien Remission (TFR) der CML-Patientengemeinschaft
Umfrage zur Therapiefreien Remission (TFR) der CML-Patientengemeinschaft
jangeissler
 
Patientenperspektive im Studiendesign
Patientenperspektive im Studiendesign Patientenperspektive im Studiendesign
Patientenperspektive im Studiendesign
jangeissler
 
Reasonable Legal Agreements between Patient Advocates and Pharma Companies
Reasonable Legal Agreements between Patient Advocates and Pharma CompaniesReasonable Legal Agreements between Patient Advocates and Pharma Companies
Reasonable Legal Agreements between Patient Advocates and Pharma Companies
jangeissler
 
Bericht LeukaNET / leukaemie-online.de und CML Advocates Network
Bericht LeukaNET / leukaemie-online.de und CML Advocates NetworkBericht LeukaNET / leukaemie-online.de und CML Advocates Network
Bericht LeukaNET / leukaemie-online.de und CML Advocates Network
jangeissler
 
How to get the most of the EHA congress as a CML patient advocate
How to get the most of the EHA congress as a CML patient advocateHow to get the most of the EHA congress as a CML patient advocate
How to get the most of the EHA congress as a CML patient advocate
jangeissler
 
European Patient Perspective on Access and Innovation with Multiplex Genomic ...
European Patient Perspective on Access and Innovation with Multiplex Genomic ...European Patient Perspective on Access and Innovation with Multiplex Genomic ...
European Patient Perspective on Access and Innovation with Multiplex Genomic ...
jangeissler
 
European Cancer Patient Advocacy: Introduction to the community, key stakehol...
European Cancer Patient Advocacy: Introduction to the community, key stakehol...European Cancer Patient Advocacy: Introduction to the community, key stakehol...
European Cancer Patient Advocacy: Introduction to the community, key stakehol...
jangeissler
 
Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017
Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017
Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017
jangeissler
 
CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...
CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...
CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...
jangeissler
 
How to get the most of EHA as a patient advocate
How to get the most of EHA as a patient advocateHow to get the most of EHA as a patient advocate
How to get the most of EHA as a patient advocate
jangeissler
 
PCR-Info-Projekt (Cornelia Borowczak)
PCR-Info-Projekt (Cornelia Borowczak)PCR-Info-Projekt (Cornelia Borowczak)
PCR-Info-Projekt (Cornelia Borowczak)
jangeissler
 
Similarities and differences between Rare Cancers and Rare Diseases
Similarities and differences between Rare Cancers and Rare DiseasesSimilarities and differences between Rare Cancers and Rare Diseases
Similarities and differences between Rare Cancers and Rare Diseases
jangeissler
 
The role of patients and healthcare providers in translational medicine
The role of patients and healthcare providers in translational medicineThe role of patients and healthcare providers in translational medicine
The role of patients and healthcare providers in translational medicine
jangeissler
 
How to communicate scientific and medical information to patients, advocates ...
How to communicate scientific and medical information to patients, advocates ...How to communicate scientific and medical information to patients, advocates ...
How to communicate scientific and medical information to patients, advocates ...
jangeissler
 

More from jangeissler (20)

Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten
Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten
Relevanz von Laienzusammenfassungen von Studienergebnissen für Patienten
 
Don't just talk about patient centricity - put meaningful patient engagement ...
Don't just talk about patient centricity - put meaningful patient engagement ...Don't just talk about patient centricity - put meaningful patient engagement ...
Don't just talk about patient centricity - put meaningful patient engagement ...
 
CML: A tiger in the cage? A (European) perspective on CML disease management
CML: A tiger in the cage? A (European) perspective on CML disease managementCML: A tiger in the cage? A (European) perspective on CML disease management
CML: A tiger in the cage? A (European) perspective on CML disease management
 
Sicht der Patienten auf Real World Data, Register und Versorgungsdaten
Sicht der Patienten auf Real World Data, Register und VersorgungsdatenSicht der Patienten auf Real World Data, Register und Versorgungsdaten
Sicht der Patienten auf Real World Data, Register und Versorgungsdaten
 
Überblick der Aktivitäten von Leukämie-Online und CML Advocates Network
Überblick der Aktivitäten von Leukämie-Online und CML Advocates NetworkÜberblick der Aktivitäten von Leukämie-Online und CML Advocates Network
Überblick der Aktivitäten von Leukämie-Online und CML Advocates Network
 
Andreas Willer - Rehabilitation für Patienten mit CML
Andreas Willer - Rehabilitation für Patienten mit CMLAndreas Willer - Rehabilitation für Patienten mit CML
Andreas Willer - Rehabilitation für Patienten mit CML
 
Umfrage zur Therapiefreien Remission (TFR) der CML-Patientengemeinschaft
Umfrage zur Therapiefreien Remission (TFR) der CML-PatientengemeinschaftUmfrage zur Therapiefreien Remission (TFR) der CML-Patientengemeinschaft
Umfrage zur Therapiefreien Remission (TFR) der CML-Patientengemeinschaft
 
Patientenperspektive im Studiendesign
Patientenperspektive im Studiendesign Patientenperspektive im Studiendesign
Patientenperspektive im Studiendesign
 
Reasonable Legal Agreements between Patient Advocates and Pharma Companies
Reasonable Legal Agreements between Patient Advocates and Pharma CompaniesReasonable Legal Agreements between Patient Advocates and Pharma Companies
Reasonable Legal Agreements between Patient Advocates and Pharma Companies
 
Bericht LeukaNET / leukaemie-online.de und CML Advocates Network
Bericht LeukaNET / leukaemie-online.de und CML Advocates NetworkBericht LeukaNET / leukaemie-online.de und CML Advocates Network
Bericht LeukaNET / leukaemie-online.de und CML Advocates Network
 
How to get the most of the EHA congress as a CML patient advocate
How to get the most of the EHA congress as a CML patient advocateHow to get the most of the EHA congress as a CML patient advocate
How to get the most of the EHA congress as a CML patient advocate
 
European Patient Perspective on Access and Innovation with Multiplex Genomic ...
European Patient Perspective on Access and Innovation with Multiplex Genomic ...European Patient Perspective on Access and Innovation with Multiplex Genomic ...
European Patient Perspective on Access and Innovation with Multiplex Genomic ...
 
European Cancer Patient Advocacy: Introduction to the community, key stakehol...
European Cancer Patient Advocacy: Introduction to the community, key stakehol...European Cancer Patient Advocacy: Introduction to the community, key stakehol...
European Cancer Patient Advocacy: Introduction to the community, key stakehol...
 
Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017
Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017
Häufige Fragen von CML-Patienten und Welt-CML-Tag 2017
 
CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...
CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...
CML: What's New at EHA? Tim Brümmendorf, EHA Capacity Building Session, EHA c...
 
How to get the most of EHA as a patient advocate
How to get the most of EHA as a patient advocateHow to get the most of EHA as a patient advocate
How to get the most of EHA as a patient advocate
 
PCR-Info-Projekt (Cornelia Borowczak)
PCR-Info-Projekt (Cornelia Borowczak)PCR-Info-Projekt (Cornelia Borowczak)
PCR-Info-Projekt (Cornelia Borowczak)
 
Similarities and differences between Rare Cancers and Rare Diseases
Similarities and differences between Rare Cancers and Rare DiseasesSimilarities and differences between Rare Cancers and Rare Diseases
Similarities and differences between Rare Cancers and Rare Diseases
 
The role of patients and healthcare providers in translational medicine
The role of patients and healthcare providers in translational medicineThe role of patients and healthcare providers in translational medicine
The role of patients and healthcare providers in translational medicine
 
How to communicate scientific and medical information to patients, advocates ...
How to communicate scientific and medical information to patients, advocates ...How to communicate scientific and medical information to patients, advocates ...
How to communicate scientific and medical information to patients, advocates ...
 

Recently uploaded

MEDICAL PROFESSIONALISM Class of compassionate care
MEDICAL PROFESSIONALISM Class of compassionate careMEDICAL PROFESSIONALISM Class of compassionate care
MEDICAL PROFESSIONALISM Class of compassionate care
Debre Berhan University
 
GAIRIKA.pptx for Rasashastra and Bhaisajya kalpana
GAIRIKA.pptx for Rasashastra and Bhaisajya kalpanaGAIRIKA.pptx for Rasashastra and Bhaisajya kalpana
GAIRIKA.pptx for Rasashastra and Bhaisajya kalpana
AparnaNandakumar12
 
Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...
Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...
Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...
ailynolive
 
Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...
Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...
Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...
FFragrant
 
OBSTETRICS SEPSIS - BUNDLE APPROACH.pptx
OBSTETRICS SEPSIS - BUNDLE APPROACH.pptxOBSTETRICS SEPSIS - BUNDLE APPROACH.pptx
OBSTETRICS SEPSIS - BUNDLE APPROACH.pptx
Niranjan Chavan
 
Heart Valves and Heart Sounds -Congenital & valvular heart disease.pdf
Heart Valves and Heart Sounds -Congenital & valvular heart disease.pdfHeart Valves and Heart Sounds -Congenital & valvular heart disease.pdf
Heart Valves and Heart Sounds -Congenital & valvular heart disease.pdf
MedicoseAcademics
 
Text Book of Critical Care Nursing ICU NURSING
Text Book of Critical Care Nursing  ICU NURSINGText Book of Critical Care Nursing  ICU NURSING
Text Book of Critical Care Nursing ICU NURSING
BP KOIRALA INSTITUTE OF HELATH SCIENCS,, NEPAL
 
SA Gastro Cure(pancreatic cancer treatment in india).pptx
SA Gastro Cure(pancreatic cancer treatment in india).pptxSA Gastro Cure(pancreatic cancer treatment in india).pptx
SA Gastro Cure(pancreatic cancer treatment in india).pptx
VinothKumar70905
 
BCBR MCQs with Answers.pdf for exam for NMC promotions
BCBR MCQs with Answers.pdf for exam for NMC promotionsBCBR MCQs with Answers.pdf for exam for NMC promotions
BCBR MCQs with Answers.pdf for exam for NMC promotions
sathya swaroop patnaik
 
Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...
Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...
Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...
Internal medicine department, faculty of Medicine Beni-Suef University Egypt
 
Interpretation of ECG - Cardiac Arrhythmias
Interpretation of ECG - Cardiac ArrhythmiasInterpretation of ECG - Cardiac Arrhythmias
Interpretation of ECG - Cardiac Arrhythmias
MedicoseAcademics
 
vaginal thrush presentation by Dr. Rewas Ali
vaginal thrush presentation by Dr. Rewas Alivaginal thrush presentation by Dr. Rewas Ali
vaginal thrush presentation by Dr. Rewas Ali
RewAs ALI
 
Prevention of Cruelty to animals act 1960
Prevention of Cruelty to animals act 1960Prevention of Cruelty to animals act 1960
Prevention of Cruelty to animals act 1960
PratibhaSonawane5
 
How to Relieve Prostate Congestion- Here are some Effective Strategies.pptx
How to Relieve Prostate Congestion- Here are some Effective Strategies.pptxHow to Relieve Prostate Congestion- Here are some Effective Strategies.pptx
How to Relieve Prostate Congestion- Here are some Effective Strategies.pptx
AmandaChou9
 
Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...
Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...
Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...
NephroTube - Dr.Gawad
 
Drug Repurposing for Parasitic Diseases.pptx
Drug Repurposing for Parasitic Diseases.pptxDrug Repurposing for Parasitic Diseases.pptx
Drug Repurposing for Parasitic Diseases.pptx
drebrahiim
 
selllllllllllllllllllllllllllllllllllllllllllllll.pptx
selllllllllllllllllllllllllllllllllllllllllllllll.pptxselllllllllllllllllllllllllllllllllllllllllllllll.pptx
selllllllllllllllllllllllllllllllllllllllllllllll.pptx
Joebest8
 
Text Book of Operation Theater Nursing OT Nursing
Text Book of Operation Theater Nursing OT NursingText Book of Operation Theater Nursing OT Nursing
Text Book of Operation Theater Nursing OT Nursing
BP KOIRALA INSTITUTE OF HELATH SCIENCS,, NEPAL
 
Rice Bran Oil Manufacturing Process
Rice Bran Oil Manufacturing ProcessRice Bran Oil Manufacturing Process
Rice Bran Oil Manufacturing Process
nishurani4455
 
World Population Day 2024_Overview_Dr Bijan Das
World Population Day 2024_Overview_Dr Bijan DasWorld Population Day 2024_Overview_Dr Bijan Das
World Population Day 2024_Overview_Dr Bijan Das
srmnchatripura
 

Recently uploaded (20)

MEDICAL PROFESSIONALISM Class of compassionate care
MEDICAL PROFESSIONALISM Class of compassionate careMEDICAL PROFESSIONALISM Class of compassionate care
MEDICAL PROFESSIONALISM Class of compassionate care
 
GAIRIKA.pptx for Rasashastra and Bhaisajya kalpana
GAIRIKA.pptx for Rasashastra and Bhaisajya kalpanaGAIRIKA.pptx for Rasashastra and Bhaisajya kalpana
GAIRIKA.pptx for Rasashastra and Bhaisajya kalpana
 
Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...
Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...
Verified Girls Call Mumbai 🎈🔥9930687706 🔥💋🎈 Provide Best And Top Girl Service...
 
Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...
Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...
Safeguarding Reproductive Health- Preventing Fallopian Tube Blockage After a ...
 
OBSTETRICS SEPSIS - BUNDLE APPROACH.pptx
OBSTETRICS SEPSIS - BUNDLE APPROACH.pptxOBSTETRICS SEPSIS - BUNDLE APPROACH.pptx
OBSTETRICS SEPSIS - BUNDLE APPROACH.pptx
 
Heart Valves and Heart Sounds -Congenital & valvular heart disease.pdf
Heart Valves and Heart Sounds -Congenital & valvular heart disease.pdfHeart Valves and Heart Sounds -Congenital & valvular heart disease.pdf
Heart Valves and Heart Sounds -Congenital & valvular heart disease.pdf
 
Text Book of Critical Care Nursing ICU NURSING
Text Book of Critical Care Nursing  ICU NURSINGText Book of Critical Care Nursing  ICU NURSING
Text Book of Critical Care Nursing ICU NURSING
 
SA Gastro Cure(pancreatic cancer treatment in india).pptx
SA Gastro Cure(pancreatic cancer treatment in india).pptxSA Gastro Cure(pancreatic cancer treatment in india).pptx
SA Gastro Cure(pancreatic cancer treatment in india).pptx
 
BCBR MCQs with Answers.pdf for exam for NMC promotions
BCBR MCQs with Answers.pdf for exam for NMC promotionsBCBR MCQs with Answers.pdf for exam for NMC promotions
BCBR MCQs with Answers.pdf for exam for NMC promotions
 
Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...
Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...
Subcutaneous nodules in rheumatic diseases Ahmed Yehia Assistant Professor of...
 
Interpretation of ECG - Cardiac Arrhythmias
Interpretation of ECG - Cardiac ArrhythmiasInterpretation of ECG - Cardiac Arrhythmias
Interpretation of ECG - Cardiac Arrhythmias
 
vaginal thrush presentation by Dr. Rewas Ali
vaginal thrush presentation by Dr. Rewas Alivaginal thrush presentation by Dr. Rewas Ali
vaginal thrush presentation by Dr. Rewas Ali
 
Prevention of Cruelty to animals act 1960
Prevention of Cruelty to animals act 1960Prevention of Cruelty to animals act 1960
Prevention of Cruelty to animals act 1960
 
How to Relieve Prostate Congestion- Here are some Effective Strategies.pptx
How to Relieve Prostate Congestion- Here are some Effective Strategies.pptxHow to Relieve Prostate Congestion- Here are some Effective Strategies.pptx
How to Relieve Prostate Congestion- Here are some Effective Strategies.pptx
 
Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...
Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...
Hemodialysis: Chapter 11, Venous Catheter - Basics, Insertion, Use and Care -...
 
Drug Repurposing for Parasitic Diseases.pptx
Drug Repurposing for Parasitic Diseases.pptxDrug Repurposing for Parasitic Diseases.pptx
Drug Repurposing for Parasitic Diseases.pptx
 
selllllllllllllllllllllllllllllllllllllllllllllll.pptx
selllllllllllllllllllllllllllllllllllllllllllllll.pptxselllllllllllllllllllllllllllllllllllllllllllllll.pptx
selllllllllllllllllllllllllllllllllllllllllllllll.pptx
 
Text Book of Operation Theater Nursing OT Nursing
Text Book of Operation Theater Nursing OT NursingText Book of Operation Theater Nursing OT Nursing
Text Book of Operation Theater Nursing OT Nursing
 
Rice Bran Oil Manufacturing Process
Rice Bran Oil Manufacturing ProcessRice Bran Oil Manufacturing Process
Rice Bran Oil Manufacturing Process
 
World Population Day 2024_Overview_Dr Bijan Das
World Population Day 2024_Overview_Dr Bijan DasWorld Population Day 2024_Overview_Dr Bijan Das
World Population Day 2024_Overview_Dr Bijan Das
 

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
  • 3. A common perception of what patient organisations are…
  • 4. ...and how they operate…
  • 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
  • 9. European hematology patient community: 14 networks, >270 national organisations in Europe
  • 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.
  • 11. European hematology patient community is collaborating with key hematology societies and initiatives
  • 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

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. 13