Health technology assessments aim to evaluate the costs and benefits of various healthcare treatments and technology. Many organizations that conduct HTAs say they wish to incorporate the patient perspective. In practice, this does not happen often. When it does, there are a number of methodological complexities.
How do you incorporate the patient perspective into HTA?
A paper Facey et al. (2010) summarizes an approach to better incorporate the patient perspective. First, they recommend conducting a systematic literature review that includes information beyond clinical trials. “valuable evidence about patients’ perspectives may arise from a variety of forms of studies in the social and humanistic paradigm, including qualitative studies (e.g., anthropological/sociological/nursing studies) and qualitative evidence embedded within quantitative studies.” They recommend searching the following databases: MEDLINE, PubMed, EMBASE, PsycINFO, CINAHL, Sociological Abstracts, and Social Sciences Citation index. Recommended journals to search include The Patient; Health Expectations; Value in Health; Medical Anthropology Quarterly; Social Science and Medicine; Culture, Medicine, and Psychiatry; Anthropology and Medicine; and Sociology of Health and Illness.
If the literature review does not provide sufficient description of the patient perpective, primary research is needed. Primary research on patient perspectives can be either qualitative or quantitative. Qualitative research typically involves individual in-depth and focus group interviews. Quantitative research typically relies on more formal questionnaires. The former is typically more informative, but also more costly, time-consuming and more difficult to summarize.
Patient advocacy groups can also be a good resource:
Patient organizations often collect information about the reasons why patients or carers call them, or conduct surveys of their members about living with their illness. Many patient groups do not put this information into the public domain, but they may be willing to share it with researchers. Hence, it can be valuable to establish a process for requesting submissions of evidence from patient organizations to answer specific questions using qualitative or quantitative information.
The paper also proposes a variety of mechanisms through which patients can be involved in the HTA process directly.
- Facey, Karen, Antoine Boivin, Javier Gracia, Helle Ploug Hansen, Alessandra Lo Scalzo, Jean Mossman, and Ann Single. “Patients’ perspectives in health technology assessment: a route to robust evidence and fair deliberation.”International journal of technology assessment in health care 26, no. 03 (2010): 334-340.