Zaragoza, 27-28 April 2017

Patient Involvement in HTA:

the Spanish experience

Pedro Serrano Aguilar y Ana Toledo Chávarri Servicio de Evaluación y Planificación del Servicio Canario de Salud

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

Introduction

This presentations will cover the following themes: - What are the main challenges that Spanish HTA bodies need to involve patients in their regular activity? - Strategies and activities in Spanish agencies to incorporate patients in HTA. - Which are the key factors in moving beyond good-willed theory to real experience of patient engagement in HTA? - What are the previous experiences do we have on patient involvement (PI)? - What is an expert patient? What do you expect from her? Programs and services to support effective patient participation?

The Spanish HTA Network: RedETS

Commitment with Patient Involvement

•The Spanish Ministry of Health and the RedETS recognise the need and value of active participation of patients to improve decisions in relation to HTA

•Patients have unique knowledges, experiences and perspectives that can contribute in an essencial manner to HTA.

• Making explicit, understanding and applying this knowledge can improve the answer given to patients' needs;

• Improve democratization, transparency, responsability and sustainability in decision making.

Main identified challenges

• Increasingly open RedETS to patient participation in its

different activities.

• Involve patients in all HTA reports.

• Develop procedures and methodology to involve patients allowing them to make valuable contribution

• Inform and train patients, HTA developers and other agents for PI

Facilitators of Pacient Involvement

• Previous PI experiences in Evidence Based Products – Clinical Practice Guidelines:

• Breastfeeding and Diabetes (Osteba) • Depression in children (Avalia-t) • Inherited Retinal Dystrofia and Lupus (SESCS) • PI methodology (IACS)

– SDM Tools (AQUAS, ISCIII, SESCS...) – Evidence Based products for patients

• PyDesalud.com (SESCS) • Sarcoidosis (Avalia-T) or IRD guides for patients

– HTA (SESCS) • Blood glucose monitoring device • Neonatal screening

– And some failures... (Prostate Cancer Genetic test, SESCS)

Reviewing our experience

• Interviews with HTA Units directors and expert patients • HTA perspective

– Overall satisfaction – Some worries:

• What patients?: representativity and diversity • Lobby

• Expert patients perspective – Increasing satisfaction – We must be prepared for specific contributions from

patients and how to use them

Patient Involvement Sgtrategy

2016: PI Methodological Handbook (DRAFT on REVIEW) - Methodology: - SR - In-depth Interviews, - Delphi, - and consensus in the HTA Netwok Council - Results:

- Methodological framework and tools adapted to the work of the Spanish HTA Network (expected contributions, who, how). - Proposal: Patient Involvement Strategy: Including short, medium and long term actions was discussed in the RedETS governing body in March 2017

Short Term: Patient Involment in 2017

The Patient Involvement Strategy for 2017: 1. Public Declaration 2. Establish procedures for patient intivation, selection and participation to RedETS activities 3. Pilot experiences: Most RedETS HTA agencies will increasingly involve patients in HTA reports, starting along 2017, to test the procedures and learn from experience. Patients will involve in: 1) protocol development (helping to define objectives and scope of the report); 2) reviewing the preliminary version of the HTA report. 3) Contributing to the patient version of the summaries

Firts Actions in 2017

4. Training materials for patientes. (IACS, Madrid, Avalia-T and SESCS). 5. Declaration of interest document adapted for patient participation. 6. Promoting sinergies with other spaces for patient participation establised by the Spanish Ministry of Health as the Network of Health Schools for Citizenship.

Mid term PI actions (2018-2019)

1. Extend the scope of patient participation: reviewing literature and other resources to introduce patient related issues in HTA reports 2. Training for HTA technicians to improve capacity on patient involvement and on the incorporation of patient contribution to HTA reports 3. Dissemination activities targeting patients, carers and users and their associations 4. Active disemination of the public alegations calls to increase participation of patients associations. 5. PI Evaluation: conduct a qualitative evaluation and create a checklist to facilitate PI and transparency

Long term PI actions

1. Extend patient participation to all HTA reports 2. Modify methodologies and procedures in relation to the results of the evaluation 3. Establish mechanisms to incorporate and document patient contributions and document them in a transparent manner 4. Conduct primary studies to introduce patient perspective in HTA when necessary 5. Ensure representativity and diversity in patient involvement 6. Consider patient participation in RedETS structure 7. Adapt current selection and priorization tools to allow patient involvement

• RedETS commitment with IP

• Increasing capacity for effective patient participation

• and a long road to drive on...

Conclusions

anatoledochavarri@sescs.es

Thanks!