jornadas #patientinhta · valentina strammiello

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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

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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

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

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

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

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

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

• 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

• 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

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

• 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

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

Patient involvement in HTA

• Scoping • Prioritisation • Assessment • Follow up • Role of patient

organisations and individual patients • not a thick the

box exercise

Patient involvement in the HTA life cycle

• 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

/europeanpatientsforum /eupatientsforum

More information www.eu-patient.eu [email protected]

THANK YOU FOR YOUR ATTENTION!

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