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.
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 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
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 English, Spanish, Mandarin, Italian, Polish 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
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
Other Useful Guides
- pan-Canadian Oncology Drug Review (pCODR) Guide for Patient Advocacy Groups (PDF) to provide submissions for oncology drugs undergoing HTA review. This may also be found on the pCODR website at www.pcodr.ca
- pCODR/Canadian Partnership Against Cancer: How cancer drug funding decisions are made
- Scottish Health Council (SHC). The Participation Toolkit: How to Conduct Surveys (PDF). This may also be found on the SHC website at www.scottishhealthcouncil.org
- Ethical Issues for patient groups to consider when collecting and reporting information for HTA submissions - Short Guide (PDF)
- Ethical Issues for patient groups to consider when collecting and reporting information for HTA submissions - Long Guide (PDF)
National Codes of Practice on relationships between the pharmaceutical industry and patient organisations
- International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)
- The European Federation of Pharmaceutical Industries and Associations (EFPIA)
- The Pharmaceutical Research and Manufacturers of America (PhRMA)