the uprising role of patient advocacy · jan geissler ceo, patvocates ... and news from clinical...

The uprising role of patient advocacy

- and what we need to know

Jan GeisslerCEO, Patvocates

Co-Founder, CML Advocates Network

Ex-Director, EUPATI

How I became a patient advocate…

and what drives me

▪ Chronic Myeloid Leukemia in 2001 (at age 28)

▪ Joined a Phase II clinical trial, found via Singapore-USA-

Mannheim, on therapy for 13 years

▪ Founded leukaemie-online.de in 2002

▪ Co-founded European Cancer Patient Coalition in 2003

▪ Co-founded CML Advocates Network in 2005

▪ Left my telecoms industry job in 2008

▪ Founded Patvocates in 2010

▪ Director of the European Patients’ Academy (EUPATI) 2011-2017

▪ Patvocates think tank & consultancy from 2017

One step back…

What is Patient advocacy?

A common perception of what patient organisations are…

Patient activism soon after 1968…

Today’s reality:

Patient organisations operate on 3 levels

Provide patient support

Shape health & regulatory policy

Support and shape research

My first steps in patient

advocacy…

▪ Launched April 2002

▪ Grassroots community

for peer to peer support

and news from clinical trials

▪ Today:

>1.300 news articles

>30.000 forum articles

CML study register

▪ Run by a small number of

volunteers

Building networks

and collaboration…

CML Advocates Network: global network of

leukemia patient organisations▪ Drivers

▪ Founded 2007 by 4 advocates

▪ Public directory of CML groups

▪ Platform to get the leaders / advocates to collaborate

– on social media and via annual conference

▪ Build skills, coordinate campaigns,

build partnerships, share knowledge

▪ Connecting 122 patient organisations

in 92 countries today

▪ Today:

• Toolboxes for members

• Own generation of data

• Involvement in research

European patient advocacy community

(cancer, rare diseases, chronic diseases)

HEMATOLOGY

RARE

CANCERS

ALL

CANCERS

PAEDI

-

ATRIC

ALL

RARE

DISEASES

Community engagement with medical societies,

European Medicines Agency, EU projects

Patient Roundtable

Steering

committee

HEMATOLOGY

RARE

CANCERS

ALL

CANCERS

Patient Organisations Workgroup

& European Affairs committee

PAEDI

-

ATRIC

Patient Advocacy

Committee with 16 PO

umbrellas & full board seat

Patient Organisations

Workgroup & Full Membership

for patient advocates

Institutional Advisory Board

Training Courses

EC Expert Groups on Cancer Control and

Rare Diseases

European Reference Networks

(EuroBloodNet, EURACAN, Eurogentris)

EMA Patient & Consumer Working Party

& SAC & other Committees

Moving from a supply- to a demand driven model: Patients’

key role in all aspects of healthcare, policy and research

Research ethics committees HTA agencies and committees Clinical research

Public Competent authorities Policy makers

Driving force

Co-researcher

Reviewer

Advisor

Info provider

Research subject

The typical challenges of non-profit organisations

(like our patient organisations)

▪ “All for the patient” … Talking the talk - but does this have impact?

Does it change decisions? Or is it just a tick-box exercise?

▪ Great ambitions, comparably low budget

▪ Most people contributing “on top of their other things”, constant need to motivate people

to do this in the extra hour

▪ Uncertainty due to lack of sustainable funding

▪ Constant time pressure to deliver

▪ Knowledge gaps on our side – know the rules to break them

There is no shortcut to knowledge:

The capabilities and knowledge we need

Strategically build your and your team‘s

knowledge and skills

RESEARCH & DATA

• How research & development works

• Patient-reported outcomes• Reading scientific papers and

interpreting scientific data• Evidence-based advocacy

HEALTHCARE SYSTEMS, POLICY AND

ACCESS• Access to treatment & care • Regulatory processes• Navigating healthcare system,

differences, EU vs country level

• Patients rights• How industry works

ADVOCACY TOOLS & SKILLS

• Accessing information• Project management• Presentation skills• NGO governance• Financial management • Managing volunteers

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DISEASE & CARE

• Prevention• Understanding the disease• Therapeutic landscape• Care pathways• Living with the disease



RESEARCH & DATA










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DISEASE & CARE


Specialist

Specialist

Medium level

Starters level

Specialist

Specialist

Specialist

Medical conferences, e.g. ESMO

(27 Sept – 1 Oct 2019), ASH, EBBC, …

Patient days, e.g. your

AGM, your umbrella’s annual meetings



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RESEARCH & DATA










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DISEASE & CARE


Specialist

Specialist

Specialist

Medium level

Starters levelWECAN SmartStart

(6-8 July 2019, via your umbrella org)

WECAN/ESO Masterclass (8-9 July 2019,

via your umbrella org)



RESEARCH & DATA




DISEASE & CARE




19





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Specialist

Specialist

Specialist

Specialist

Specialist

HTA: ISPOR Europe (4-6 Nov 2019)

Regulatory: EURORDIS Summer School(10-14 June 2019)

R&D / Regulatory / HTA

WECAN SmartStart(~6-8 July 2019,


WECAN Masterclass (7-9 July 2019,

via your umbrella org)Regulatory: DIA Europe

(Feb 2020)

Healthcare systems& advocacy in policy

EPF Capacity Building Prg.(1st week of July 2019,via your umbrella org)Medium level

Starters level

RESEARCH & DATA




DISEASE & CARE


Specialist

Specialist

Specialist

Medium level

Starters level





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R&D: EUPATIPatient Expert Training Course #4

(Applications: Summer 2019)

EUPATI Toolbox (free on web @ eupati.eu)

WECAN Masterclass (7-9 July 2019,


Understanding patient involvement in research:

European Patients’ Academy (EUPATI)

Patient Expert Training Course

14 month expert-level course

154 patient experts trained

in 3 courses, >60 disease areas,

>30 countries

4th course starting in summer 2019

EUPATI Toolbox

Web-based knowledge base with

>3.000 content elements

9 languages

Free re-use: Creative Commons

1.3m unique users since start

Conclusion

▪ Patient advocacy has evolved from a grassroots movement to a patient-driven, evidence-based community organized in networks, collaborating with clinical researchers, industry, regulators and policy makers

▪ Today, patients can play a key role in all aspects of healthcare, policy and research

▪ However, to have impact and to change the system, we need to stop complaining – we need to strategically build our skills and “do it”

Questions?

[email protected]

the uprising role of patient advocacy · jan geissler ceo, patvocates ... and news from clinical...

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