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

1. Zaragoza, 27-28 April 2017
A patient perspective on HTA involvement
Valentina Strammiello
Programme Managerr
PUBLIC HEALTH CONFERENCE
10th anniversary of the Spanish Network of Health Technology Assessment (HTA) Agencies:
Insights for collaborative networking
Towards Patient and public engagement in HTA

2. European Patients’ Forum:
• Umbrella organisation
• active since 2003
• 74 member organisations
Mission
“To ensure that the patient community drives health policies and
programmes that are adapted for their final users, patients.”
EPF’s vision is high-quality, patient-centred, and equitable health and
social care for all patients across the EU.
GOAL #2 To contribute to improvements in health systems that enable
equitable access to sustainable and high-quality healthcare designed and
delivered to meet patients’ and informal carers’ needs at all levels of care,
embracing innovation in all its forms
About EPF

3. Helicopter view of patient involvement in HTA in
other European HTA agencies or (should be
working)
Who and how is involved or should be involved, in
which stages of the HTA
Main difficulties and challenges faced in patient
engagement in HTA for a proper patient
participation and how they could be addressed
Overview of my presentation

4.  Availability of funds/affordability
 NHS system (full universal coverage? Bismarckian?
Beveridge?)
 Who conducts the assessments? Who decides?
 Some MS have independent review bodies, others
have entities under government mandates
No standard methodology at EU level (yet)
 Technologies considered for HTA (pharma products and/or
medical devices, procedures etc)
Helicopter view of patient involvement in HTA in
other European HTA agencies
= chronic condition ≠ treatments

5. Who did it first in Europe?
France and Spain
Started in the early ’80
• Since 2016 France –through HAS
(Haute Autorité de Santé)- has started a pilot project on
patient involvement in HTA
• In a questionnaire patients assess whether treatments
meet their expectations, report how they cope with their
conditions, and impact on quality of life
• The project focuses on selected conditions
• So far results seems not to be optimal for patient
organisations

6. Institute for Quality and Efficiency in Health Care (IQWiG)
(assessments)
Federal Joint Committee- G-BA (appraisals)
Procedures: inclusive priority setting
G-BA sub-committees appraise evidence (patients*
included, but no voting rights)
• G-BA board issues binding decision for sickness funds
• If patient representative’s position differs from the
board’s decision, this is noted in final documentation
and they may take part in press conference to explain
their position
*Nominated by national umbrella organisation of self-help
groups – pool of approximately 300
Who claims they do it better
Germany

7. • IQWiG generally invites patient reps to provide
input, mainly when patient-relevant outcomes are
defined for a protocol
• Anyone can submit comments on IQWiG draft
protocols and draft reviews during 4-week
consultation period
• GBA makes open requests for evidence on website
and posts to stakeholders (including patient
organisations) allowing 1 month for submission
Patient input in Germany

8. • NHS Centre for Reviews and Dissemination (Assessments)
• National Institute for Health and Clinical Excellence
(Appraisals)
– Patient involvement units
• Scottish Medicines Consortium (SMC)
– Decision making Committees
– Involvement of lay citizens/ patient representatives
– National policy that patients must be involved in healthcare
decision-making
– SMC Patient & Public Involvement Group (PAPIG)
– Development of submission form for patients
– Public Involvement Officer supports evidence submissions and
provides feedback
– Plain English explanations of SMC process
Who does it better?
UK- England and Scotland

9. Rationale: lack of resources to ensure patients access to
innovative technologies
Countries involved:
– Bulgaria (lead), Croatia, Hungary, Romania, Slovakia
• But in the future also: Bosnia and Herzegovina,
Macedonia, Serbia, Slovenia
– Who is involved in the Think Tank:
• Experts, medical doctors, pharmaco-economists,
and representatives from patient associations
A bottom up regional initiative in Eastern Europe
Central Eastern Europe Think Tank on Patient Access-CEE
TTPA

10. • HTA Network Patient and Consumer
Stakeholder Pool
• Patients organisations collaborating with
EUnetHTA
• EPF informal Working Group on HTA
• HTAi PCIG-Patient Panel
Patients actions at EU/international level

11. Who and how is involved or should be
involved, in which stages of the HTA

12. Patient involvement in HTA
• Scoping
• Prioritisation
• Assessment
• Follow up
• Role of patient
organisations
and individual
patients
• not a thick the
box exercise

13. Patient involvement in the HTA life cycle

15. • Time
• Language
• Patients perceived as a burden /passive actor
• Involve and inform about the full life cycle
• Education
• Build connection with patient organisations
Challenges faced in patient engagement in HTA
for a proper patient participation

16. /europeanpatientsforum
/eupatientsforum
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info@eu-patient.eu
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