Home > Patient involvement in HTA > Use of patient-based evidence

HTA bodies that perform their own literature reviews, such as SBU, DEFACTUM (part of Corporate Quality in Central Denmark Region), AGENAS, CADTH, RedETS (the Spanish Network of Health Technology Assessment Agencies and Benefits of the National Health System) and SHTG, may undertake specific literature searches to determine patient issues. They use iterative processes to identify issues of importance to patients, and then search for literature (often qualitative research studies) that describes patients’ perspectives and experiences about those issues. Such studies provide evidence of how people, including patients, carers and family members, perceive and experience a condition and its treatment. They are in a form that can be critically reviewed and is explicit about the strengths, limitations and bias of its methods. Systematic processes, such as qualitative evidence synthesis, can be used to critically appraise such qualitative research and synthesise it using methodologies from social and humanistic research (Swedish Council on HTA 2013). If evidence is lacking, primary research can be commissioned and reported as part of the HTA (Danish National Board of Health 2007).

EUnetHTA’s HTA Core Model Online (2017) includes a patient and social aspects domain that focuses on patients’ and their significant others’ considerations, worries and experiences before, during and after the implementation of the technology. The EUnetHTA HTA Core Model Handbook provides guidance on conducting research into patients’ perspectives that could be used for a variety of needs. In such processes, patient groups or patient experts can also:

  • provide helpful input to the protocol that defines the research questions
  • identify outcomes that matter most to patients
  • provide important consultation comments on the draft guideline and recommendations.

In recognition of the increasing use of rapid assessments, Health Improvement Scotland has produced 3 resources, which they are trialling. See the HTAi website for the guide to conducting rapid qualitative evidence synthesis for HTA, the methodology and the coding template.

In addition to qualitative research, patient preference methodologies, such as DCEs and AHPs, may provide a useful additional source of evidence to inform HTA recommendations. Some HTA bodies are exploring these methodologies. Patient preference research may be especially useful when a technology is being compared with a standard treatment that has different features, such as mode, ease of administration, side effects, and the risk of serious side effects (Bouvy et al. 2020). However, further research is needed to ascertain its optimal use in HTA and the health technology development lifecycle (Danner and Gerber-Grote 2017). Limitations associated with stated preference methods, such as participant innumeracy, hypothetical bias, variation among subgroups, and inert or flexible preferences need to be considered. A PCIG project subcommittee is investigating these issues.

IQWiG conducted 2 preference elicitation studies – one using DCE and one using AHP – in which patients valued the importance of treatment outcomes in different indications. It found the studies had potential to generate weights or prioritise outcome-specific HTA results. The AHP study demonstrated that patients valued different outcomes to clinicians and the DCE study in lung cancer identified important alternative endpoints (Egbrink and IJzerman 2014).