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Patient participation in Health Technology Assessment

Patient participation in Health Technology Assessment (HTA) is an approach to HTA which aims to include patients in the process of HTA. It is sometimes called consumer or patient engagement or consumer or patient involvement, although in HTA the latter term has been defined to include research into patients’ needs, preferences and experiences as well as participation per se. In HTA, patient participation is also often used to include the participation of patient groups, patient advocates, and patients’ families and carers in the process.

As HTA aims to help healthcare funders, such as governments, make decisions about health policy, it often involves the question as to whether to use broadly defined health “technologies”, and if so, how and when; then patients comprise a key stakeholder in the HTA process. Additionally, because HTA seeks to assess if a heath technology produces useful outcomes for patients in real world settings (clinical effectiveness) that are good value for money (cost effectiveness), understanding patients’ needs, preferences and experiences is essential.

When patients take part in HTA, their knowledge gained from living with a condition and using treatments and services can add value to an HTA. Sometimes they are called experience-based experts or lay experts. Patients can add value to HTAs by providing real world insights (e.g. implications of benefits and side effects, variation in clinical practice) highlighting outcomes that matter, addressing gaps and uncertainties in the published literature, and contributing to the value construct that shapes assessments and decisions.

Approaches
In 2017 an entire book was published on patient involvement in HTA (Eds Facey KM, Hansen HP, Single ANV) bringing together research, approaches, methods and case studies prepared by 80 authors (http://www.springer.com/gp/book/9789811040672). It demonstrates that practices vary between HTA bodies, and patients can potentially contribute at every stage of an HTA from scoping the questions asked about the health technology, providing input, interpreting the evidence, and drafting and communicating recommendations. It suggests that patient participation in HTA depends on two-way communication and is a dialogue for shared learning and problem solving. The approach taken should be driven by the goal of participation. The most common way that patients take part in HTA is by providing written submissions and participating in expert meetings (for example as an equal member of an expert group or by attending an expert meeting to present information and answer questions).

Limitations and criticism
Although patient participation has been adopted and developed by a variety of HTA bodies around the world, there are limitations and criticisms of its use. These include concern about how and when to involve patients, the burden of participation for patients, representativeness of patients, the potential for conflict of interest (in relation to patient groups receiving funding from manufacturers), and lack of evaluation of patient participation. Facey et al. (2017) published the book on patient involvement in HTA to establish consistent terminology in the field and demonstrate a range of recognised approaches and methods found in published literature. Authors also highlighted the challenges of evaluation, rapid (short HTAs) and the problem of HTA bodies confusing patient input (information provided by patients and patient groups taking part in HTA) with patient-based evidence (robust research into patients’ needs, preferences and experiences). The book itself is not open access, but the lead editor also published a paper on the topic six years before the larger collection. One of the issues for patient participation in HTA is that HTA has often been constructed as a scientific process which must remain free from the subjective input of patients. Likewise, Gauvin et al. report that their "analysis reveals that HTA agencies' role as bridges or boundary organizations situated at the frontier of research and policymaking causes the agencies to struggle with the idea of public involvement" (page 1518).

However, HTA would be better understood as a policy tool which critically reviews scientific evidence for a local context and this review is shaped by those involved in the process. There are many ways that public participation in HTA, including patients, can be implemented. In fact, an entire "typology of issues” has been developed by Gauvin et al., in which each type is “related to the most appropriate public involvement methods". Facey (2017) built on this work in Chapter 5 to describe it in detail for patient participation in HTA.

Sociologist Andrew Webster sees the problem as "a failure to recognise that evaluation is a contested terrain involving different sorts of evidence related to different sorts of context (such as the experimental derived from clinical trials, evidential, derived from existing clinical practice, and experiential, based on patients' experiences of an intervention".

A further issue for patient participation in HTA is that of the individual versus the group. The HTAi's list available for endorsement on values for patient involvement express this issue as ‘involvement. . . contributes to equity by seeking to understand the diverse needs of patients with a particular health issue, balanced against the requirements of a health system that seeks to distribute resources fairly amongst all users’.

Kelly at al. explain (with their original citations shown here in brackets): "From the moment Archie Cochrane linked questions of clinical effectiveness to cost effectiveness [17] and cost utility analysis was chosen as the basis for assessing value for money, [Evidence-Based Medicine] EBM and HTA have been framed within the utilitarian philosophical tradition. Utilitarianism is premised on the view that actions are good insofar as they maximize benefit for the greatest number [51]. This is not necessarily congruent with what is in the best interest of an individual patient [34]."