Ensuring patient involvement in health technology assessments (HTAs) and clinical practice guidelines (CPGs) is important. However, the goals and methods of such involvement are not always clear.
The aim of this study was to 1) discover ways to involve patients in HTA and CPG processes, 2) describe challenges, and 3) find ways of informing patients about HTAs and CPGs in Finland.
As part of a one-day seminar targeted at representatives of patient organizations (POs), 3, 1-h focus group discussions were held (n = 20, with 14 PO representatives). PO representatives included real patients and health care professionals working in the organizations. The discussions were tape-recorded, transcribed, and thematically analyzed.
Focus group participants highlighted the importance of gathering patient views from a group of patients, rather than individuals. Surveys through POs were the most frequently mentioned means of gathering patients' views. PO representatives reported interest in cooperating in HTA and CPG processes. The most often mentioned challenges were finding appropriate representatives for the target group and conveying information about HTAs and CPGs to patients. Multichannel communication was seen as essential. Furthermore the information should be readable, comprehensible, tailored, reliable, reusable, complementary, and timely.
Possible strategies to involve patients in HTA and CPG processes were incorporating patient representatives in the CPG and HTA groups, offering timely possibility to participate, and ensuring reporting with clear and unambiguous language. The main identified challenge was finding appropriate representatives of the target group. The role of POs was seen as important particularly when informing the patients.