For Patient Groups and Individual Patients
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 to Understand HTA
HTAi 2016 Panel Session Report on Patient Involvement in the Development, Regulation and Assessment of Treatments for Rare Disease
Introducing HTA to patients and patient organizations webinar – A 20-minute video presentation by Karen Facey, for patients, patient organizations, self-help groups and citizens’ groups’, filmed at the 2013 HTAi Annual Meeting HTAi in Seoul.
- Slides (PDF) are also available
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.
HTAi Glossary for Consumers and Patients – HTA terms explained in plain language.
Citizen and Patient Involvement Library – See the HTAi Vortal for peer reviewed papers on patient and public involvement in HTA. This resource was developed in collaboration with the Information Retrieval IG.
- More information may be found on the SMC website.
- Patient Expert Training Course, including the module on HTA
Resources to Involve Patient Groups and Individual Patients 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.
Questionnaire – Help us create an online directory of patient involvement in HTA resources.
Patient Group Submission Templates – Generic patient submission templates for an HTA, with useful prompts (English and French):
- Medicine’s HTA – English | French | Spanish (Word doc.) & Cover Note (Word doc.)
- Non-medicine’s HTA – English | French (Word doc.) & Cover Note(Word doc.)
- Diagnostics HTA
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 completing a patient group submission template: For health technology assessment and appraisal of medicines
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.
- Scottish Health Council (SHC) Participation Toolkit: How to Conduct Surveys (PDF); this may also be found on the SHC website.
- 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: