For Patients and Patient Groups

This webpage aims to provide patients and patient groups with an understanding of their role and contributions they can make in HTA; and what they can expect.

Frequently Asked Questions (FAQs) for Patients and Patient Groups

Resources...for patients and patient groups to understand HTA

Report of HTAi 2016 panel session on Patient Involvement in the Development, Regulation and Assessment of Treatments for Rare Diseases (PDF)

Introducing HTA to patients and patient organizations webinar

A 20 min video presentation by Karen Facey – for patients, patient organizations, self-help groups, citizens’ groups’, filmed at HTAi Seoul, June 2013. Webinar Link and Slides (PDF)

eMEET 

A training resource for patient advocacy groups giving an overview of medicines development, evaluation and assessment. Developed by Eli Lilly and Co with internationally renowned experts in the field of web training, patient involvement & HTA - www.meetforpatients.com

Values and Quality Standards for Patient & Citizen Involvement in HTA

Available as a Poster (PDF) or two page document (PDF). Also available in French (Word doc).

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

Written for patient organizations who want to represent the views of patients but may not clearly understand what HTA is and how they can contribute. Available in EnglishSpanishMandarinItalianPolish and Greek (PDF)

Glossary

HTAi Glossary for Consumers and Patients - HTA terms explained in plain language (available in English and Greek) (PDF)

Citizen and Patient Involvement Library 

See the HTAi Vortal for peer reviewed papers on patient and public involvement in HTA. 

Scottish Medicines Consortium (SMC) Review of Patient Involvement

Available as PDF. More information can be found on the SMC website.

The European Patients’ Academy (EUPATI)

Short guides and videos about HTA (Weblink)

Expert Training Course including the module on HTA (Weblink)

Resources...to involve patients and patient groups in HTA

The following tools are to assist Patient Groups in providing HTA agencies with information on patient and caregiver experiences, living with the disease, its management and any harms and unmet needs.

Patient Group Submission Templates
Generic patient submission templates for an HTA, with useful prompts in English and French

The French translations has been kindly produced and made available by Haute Autorité de Santé (HAS), the French national HTA body.

Guidance for providing patient input using the templates 

Guidance for patient organisations to complete a patient group submission template: For health technology assessment and appraisal of medicines. Available as PDF and Word Doc

Other Useful Guides

Ethics Guidance

National Codes of Practice on relationships between the pharmaceutical industry and patient organisations