The document provides an overview and introduction to the WECAN Academy 2019. The key points are: 1. The WECAN Academy brings together two existing patient advocacy training programs - the SmartStart program for new advocates and the Masterclass for experienced advocates. 2. The 2019 Academy saw 105 patient advocates from 26 countries participate across the two programs, covering topics across 4 knowledge pillars - research and data, healthcare systems and policy, advocacy tools and skills, and disease and care. 3. The document outlines the schedule and sessions covered across the 3 day program for SmartStart and Masterclass participants, demonstrating the increasing complexity and specialization of topics covered each day.

1. Welcome,
Setting the Scene
& Advocacy Principles
Ananda Plate, Myeloma Patients Europe, WECAN Chair

2.  ESO for handing over the ESO
Masterclass to WECAN and for ESO’s
continued support
 SPAEN for doing the same with
SmartStart
 Jan for the programme coordination
 WECAN members and
WECAN Programme Committee
 Michi for the logistics
 Speakers
 Sponsors
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Thank you for supporting the
WECAN Academy 2019!

3. What is WECAN?
 WECAN stands for Workgroup of European Cancer Patient
Advocacy Networks
 It is an informal workgroup which aims to act as a well-
coordinated cancer patient community towards all
stakeholders
 Increasing the level of collaboration, alignment and
mutual support between pan-European cancer patient
umbrella organisations
 It aims to share workload when contributing to different
stakeholder initiatives
 WECAN is based on the principle of subsidiarity
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4. What are the objectives of WECAN?
 Share workload for meetings and/or send only 1-2 advocates, in close alignment,
consultation and feedback structure with wider workgroup
 Coordinate and align our representation and community input into advisory boards,
expert groups and cancer initiatives
 Ensure communication and “reporting mechanisms” between leaders
 Form a "think tank" to develop ideas on how to cross bridges in advocacy
 Share resources and concepts on joint patient-driven evidence
 Map the current European scene on initiatives/political actions/organisations
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5. Who is part of WECAN?
1. Acute Leukemia Advocates
Network (ALAN)
2. Childhood Cancer
International (CCI, formerly
ICCCPO)
3. CML Advocates Network
4. Digestive Cancers Europe
5. EuropaDonna
6. EuropaUomo
7. European Men's Health
Forum
8. European Organisation for
Rare Diseases
9. European Waldenström's
Macroglobulinemia Network
10. International Brain Tumour
Alliance
11. International Kidney Cancer
Coalition
12. International
Neuroendoncrine Cancer
Alliance
13. Lung Cancer Europe
14. Lymphoma Coalition
15. MDS Alliance
16. Melanoma Patients Network
Europe
17. Myeloma Patients Europe
18. MPN Advocates Network
19. Pancreatic Cancer Europe
Network
20. Sarcoma Patients Euronet
Association (SPAEN)
21. Thyroid Cancer Alliance
22. Youth Cancer Europe
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6. WEBSITE –
www.wecanadvocate.eu
 Information about WECAN
 Recent and ongoing WECAN initiatives
 WECAN members
 Contact details
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7. Current ongoing WECAN activities and projects
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Reasonable
Agreements
between Patient
Advocates and Pharma
Companies
Fair Market Value
project
WECAN
Academy
ESO Masterclass and
SmartStart
HTA Workgroup
WECAN position on further
EU integration of Health
Technology Assessment
The contracts provided to patient
advocates are often too long and
contain ambiguous clauses.
Myeloma Patients Europe (MPE)
on behalf of the WECAN and in
close partnership with PFMD is
leading this project that involves
12 pharmaceutical companies:
• Guiding principles
• 4 contract templates:
consultancy, collaboration,
advisory board and community
speaker agreement
• Toolbox to guide patient
organisations to analyse and
shape their contracts
The contribution of patients
provides tangible value to other
stakeholders and society that
should be fairly compensated.
Compensation in this context
means honoraria or other
financial compensation by third
parties (no patient organisations)
for individual tasks such as
advisory boards, doing
presentations, providing
substantial feedback, reviewing
complex documents etc.
Reimbursement of travel cost,
daily allowances for expenses etc.
do not count as financial
compensation for tasks.
The WECAN Academy 2019
combines two leading capacity
building programmes in patient
advocacy:
• WECAN Smart Start:
Starting and Building a
National Non-Profit Patient
Group focuses on
“beginners” in patient
advocacy,
• WECAN Masterclass on
Patient Advocacy will focus
on experienced patient
advocacy leaders.
WECAN position statement on
further EU integration of HTA
supporting the European
Commission plans for joint
HTA clinical assessment and
the proposal for a regulation of
the European Parliament and
of the Council on Health
Technology Assessment (HTA)
and amending Directive
2011/24/EU (COM(2018)0051
– C8-0024/2018 –
2018/0018(COD)).

8. What do we as patient
advocates do and why do
we need knowledge?

9. Patient advocacy operates on three levels
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Patient Support
• Inform, support, navigate
• Support patients and their families affected
by a dreadful disease to make the right
choices
Research
• Engage in meaningful research in
partnership with academia, industry and all
other relevant stakeholders
Health Policy
• Influence health policy, patient care
• Influence regulators and payors to make sure they
are basing their decisions on patient preferences
• Tell politicians to do policy for patients, not just
about patients

10. However, we have a tendency to waste our energy with...
 Barking up the wrong tree – advocating at the wrong place
(e.g. EU vs national level)
 Keeping chairs warm – going to meetings that are
“interesting“, not contributing and not taking any of the
learnings back to our community
 Being territorial and waste our energy with infighting and
rivalry
 Blaming others that things are not happening, while not
thinking about what I can do myself to change things
 Disqualifying ourselves by just being emotional,
off-topic, and not well informed
 Duplicating efforts and reinventing the wheel, instead of
joining forces in common interest areas
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11. To achieve our goals, it is not enough to just be on a
mission...
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Evidence-based
advocacy
Advocating in a targeted, evidence-based,
well-educated and professional manner, and
measure impact and outcomes of what we do
is key to our success

12. The WECAN Academy is key to building that
knowledge and skills of the cancer patient community
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4 knowledge
pillars of
successful
patient
advocacy
- and why they
matter to you
12
Source:WECAN/MPNE(2019)
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
DISEASE &
CARE
• Prevention
• Understanding the
disease
• Therapeutic landscape
• Care pathways
• Living with the disease

13. 13
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
DISEASE &
CARE
• Prevention
• Understanding the
disease
• Therapeutic landscape
• Care pathways
• Living with the disease
The WECAN Academy is key to building that
knowledge and skills of the cancer patient community
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Medium level
Starters level
Expert level
4 knowledge
pillars of
successful
patient
advocacy
- and why they
matter to you

14. The WECAN Academy brings together two of the key
existing training programmes
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 3-day course for patient advocates
• who are in the process of starting a group/organisation
• who have already started an organisation and are
seeking to improve their skills
• who are relatively new in existing groups/organisations
and who would like to take future responsibility as
Chair, Board Member or Director
 The 3-day training course provides…
• basic knowledge to set up and maintain a national
cancer patient group in their own country
• networking with experienced patient group leaders and
trainers
• balanced mix of practical advocacy and support “tools”
 3-day Masterclass for experienced patient advocates
• Help participants improve their advocacy and leadership skills
• Discuss ways of improving organisational impact, effectiveness
and efficiency
• Review state-of-the-art approaches to evidence-based advocacy
There are many other cross-disease
educational programmes out there. What is
novel about the WECAN Academy is that it
ensures continued education that tackles
knowledge gaps in a systematic way for
the whole cancer patient community

15.  105 patient advocates
( SmartStart,  Masterclass)
 22 speakers ()
 24 sessions
 26 countries
 22 European cancer patient
umbrella organisations
 12 sponsors ()
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The WECAN Academy is a
unique initiative and quite an
achievement for the
community!

16.  105 patient advocates
( SmartStart,  Masterclass)
 22 speakers ()
 24 sessions
 26 countries
 22 European cancer patient
umbrella organisations
 12 sponsors ()
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The WECAN Academy is a
unique initiative and quite an
achievement for the
community!
Increasing complexity
from day to day

17. Saturday, 6 July 2019 (SmartStart only)
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ADVOCACY TOOLS & SKILLS
TRACK
11:00-12:00 (0103)
Setting the scene, advocacy principles
HEALTH-CARE SYSTEMS,
POLICY, ACCESS TRACK
14:00-15:00 (0104)
How to develop good content and patient materials – online and offline
14:00-15:00 (0105)
Healthcare ecosystem and stakeholder management
RESEARCH
AND DATA
TRACK
15:30-17:00 (0106)
Regulatory system. Overview of access pathways – why is access to treatment, care and diagnostics an
issue?
17:00-18:00 (0107)
How does therapy development work. Drug development lifecycle. Endpoints, trial design. Patient engagement
in research.

18. Sunday, 7 July 2019 (SmartStart and Masterclass)
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ADVOCACY TOOLS &
SKILLS
TRACK
8:30-8:45 (0200)
Welcome– setting the scene after the Masterclass attendants have joined
8:45-10:00 (0201)
Evidence-based advocacy (use of 3rd party data to create advocacy impact, and generating your own data e.g. surveys)
10:30-11:15 (0202)
Basics of Financial management: in PO: Requirements, sources, budgeting, grant writing
11:15-12:00 (0203)
Project management
building project plans, tracking progress
HEALTH-CARE
SYSTEMS, POLICY,
ACCESS TRACK
14:00-15:00 (0204)
Basics of health economics.
14:00-15:00 (0205)
How and why does access to treatment and care differ between EU Member States, how to address it in advocacy and
policy?
RESEARCH
AND DATA
TRACK
15:30-17:00 (0206)
Basics of statistics; reading scientific data and publications;
introduction to molecular biology
17:00-18:00 (0207)
Hot topics in oncology: Precision medicine, immuno-oncology, genomics, big data, real-world data

19. Monday, 8 July 2019 (SmartStart and Masterclass)
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ADVOCACY TOOLS &
SKILLS
TRACK
8:30-10:00 (0301)
Good NGO governance, and ensuring transparency and integrity
10:30 – 11:15 (0302)
Presentation skills – how not to bore your audience to death
11:15-12:00 (0303)
GDPR and data protection, how this applies to trials, registries, big data and patient orgs data
HEALTH-CARE SYSTEMS,
POLICY, ACCESS TRACK
13:00-14:00 (0304)
Affordability and sustainability. Difference between HTA and payer perspective. What is Europe's challenge? How to influence
reimbursement decisions as a patient advocate?
14:00-15:00 (0305)
Pre-approval access: to clinical trials (including cross-border, pre-approval, post-approval, and advocacy action
RESEARCH
AND DATA
TRACK
15:30-17:00 (0306)
Patient-reported outcomes, and other patient-relevant measures and endpoints
17:00-18:00 (0307)
Basics of biobanks and registries – types, value, challenges, relevance for patient advocacy

20. Tuesday, 9 July 2019 (Masterclass only)
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ADVOCACY TOOLS & SKILLS
TRACK
8:30-9:30 (0401)
Evidence-based advocacy for experts – new technologies to gather data, patient preference studies
10:00-11:15 (0402)
Not being the victim of hidden agendas: case discussions and strategy
11:15-12:30 (0403)
Models to value and pricing; emerging areas; challenges of combination pricing.
HEALTH-CARE SYSTEMS,
POLICY, ACCESS TRACK
13:30-15:00 (Session 0405)
How to improve patient relevance of clinical trials, and reviewing trial protocols
15:00-16:15 (0406)
Interpreting scientific data - identifying gaps, flaws and cheats
RESEARCH
AND DATA
TRACK
16:15
Farewell & departures

21. Snowball fight
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22. Instructions
 Take 5 coloured papers, one from each colour
 Write on each of them
• Your Name
• Your Organisation
• The topic that interests you most in the
WECAN Academy Programme
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23. Do not only focus on learning the theory presented at the
WECAN Academy – interact with people (the ones you don’t
know too) and above all….
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….get out of your
comfort zone!