Developing guidance on ethics for patient groups collecting and reporting patient information for health technology assessments

Extract: Agencies around the world are seeking to include patient and carer perspectives in health technology assessments (HTAs) [1-3], as this may enable a more accurate assessment of a health technology [2] and lead to more appropriate decisions for patients [4]. In a 2010 survey of International Network of Agencies for Health Technology Assessment (INAHTA) members, 22 agencies reported involving consumers (defined to include patients) in their HTA processes [1], and the Health Technology Assessment International's (HTAi's) Interest Group for Patient and Citizen Involvement (PCIG) has published summaries of the patient involvement processes of 11 HTA agencies [5]. In addition to these perspectives being gained through literature reviews and primary research [6], patient perspectives are sought through patient submissions, which usually take the form of responses to questions designed to elicit information not found in the published literature, such as patients' and caregivers' needs, preferences and experiences [7-11]. To create these submissions, some patient groups collaborate with researchers, but others gather the information from their members themselves using tools such as call logs, social media, surveys, interviews and focus groups. Because this entails engaging with people and collecting their personal information, patient groups need to consider the ethical and legal issues and implications. As no guidance on these issues could be located, the PCIG began developing its own specifically for patient groups involved in this work.