To support good practice, PCIG develops resources based on published literature and consultation with our members and stakeholders. Here you’ll find our resources to support patient participation and patient-based evidence. There’s also a tab for <Other Useful Resources> of our partners and friends and our <Archive> which contains older resources that are less often used or not updated.

Getting started:

HTA and patient involvement: Slides

HTAi Values and Quality Standards for Patient and Citizen Involvement in HTA: Poster (English) PDF (English) PDF (French)

HTA terms in plain language.
English | Greek

Patient participation:

Plain language summaries of applications to HTA bodies for patient groups:

Written submission templates for adaptation (word docs)

Re-appraisal of rare disease treatmentIMPACT HTA

Guidance for patient groups collecting and reporting information for input PDF or Word

Ethics for patient group collecting and reporting information for HTA input Short (2 pages) | Long (7 pages)

Engaging patients in Early Dialogue Tools and resources for HTA bodies (PCIG for IMI PARADIGM)

Patient and Citizen Involvement Resource Directory Collection of government and organization resources to assist patient and citizen involvement in HTA

Patient Based Evidence

Conducting primary and secondary research to determine patients’ perspectives – Guides from other HTA Agencies Denmark | Scotland | Sweden

Rapid Qualitative Evidence Synthesis Methodology | Coding Template | Guide

Impact

Perspectives of impact

Share your experience of a time when patient involvement had an impact in HTA Impact template

Other Useful Resources

INAHTA Position Statement on Patient Involvement in HTA (The who, what, when, how and why)

Guidelines International National Public Toolkit: Patient and public involvement in guidelines. Including consultation, participation, communication and a chapter on HTA tools

Health Equality Europe: A Guide to Understanding HTA for Patients and the Public 

English | Spanish | Mandarin | Italian | Polish | Greek

The European Patients’ Academy (EUPATI) – Short guides and videos about HTA (Weblink) Patient Expert Training Course, including module on HTA

CADTH pan-Canadian Oncology Drug Review (pCODR) Guide for Patient Advocacy Groups (PDF) to provide submissions for oncology drugs undergoing HTA review

Scottish Health Council (SHC) Participation Toolkit: How to Conduct Surveys

Scottish Medicines Consortium (SMC) Review of Patient Involvement

Archives

Granados A, Mullin T, Moseley J, Meyer F, Avetisyan R, Wong-Rieger D, Kaatee M, Skinner M, Leyden S. Multistakeholder Approaches to Improve Evidence-Based Decisions in Rare Diseases: Engagement of Patients and Patient Organizations. Report of HTAi 2016 Panel Session. Health Technology Assessment International – Canada. 2016

HTAi PCIG (Feb 2015) Good Practice Examples of Patient and Public Involvement in Health Technology Assessment.

FAQs could be one document for all three.

Citizen and Patient Involvement Library: HTAi Vortal – A searchable collection of peer reviewed papers on patient and public involvement in HTA. This resource was developed in collaboration with the Information Retrieval IG.