Public and Patient Involvement in Health Technology Assessment: A Framework for Action

Abelson, Julia; Wagner, Frank; DeJean, Deirdre; Boesveld, Sarah; Gauvin, Franςois-Pierre; Bean, Sally; Axler, Renata; Petersen, Stephen; Baidoobonso, Shamara; Pron, Gaylene; Giacomini, Mita; Lavis, John N.

doi:10.1017/s0266462316000362

Cited by 107 publications

(133 citation statements)

References 27 publications

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“…In a useful complement to these initiatives, a “framework for action” for public and patient involvement (PPI) in HTA has been developed for a Canadian HTA organization and may be applicable to other similar health systems (9). The framework draws on international practice and published research and a consultation with a variety of stakeholders.…”

Section: Discussionmentioning

confidence: 99%

EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment

et al. 2018

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The main aim of health technology assessment (HTA) is to inform decision making by health care policy makers. It is a systematic process that evaluates the use of health technologies and generally involves a critical review of international evidence related to clinical effectiveness of the health technology vs. the best standard of care. It can also include an evaluation of cost effectiveness, and social and ethical impacts in the local health care system. The HTA process advises whether or not a health technology should be used, and if so, how it is best used and which patients are most likely to benefit from it. The importance of patient involvement in HTA is becoming widely recognized, for scientific and democratic reasons. The extent of patient involvement in HTA varies considerably across Europe. Commonly HTA is still focused on quantitative evidence to determine clinical and/or cost effectiveness, but the interest in understanding patients' experiences and preferences is increasing. Some HTA bodies provide support for participation in their processes, but again this varies widely across Europe. The involvement of patients in HTA is determined at the national and regional level, and is not subject to any European-wide legislation. The guidance text presented in this article was developed as part of the work of the European Patients' Academy on Therapeutic Innovation (EUPATI) and covers the interaction between HTA bodies and patients and their representatives when medicines are being assessed. Other EUPATI guidance documents relate to patient involvement in pharmaceutical industry-led research and development, ethics committees, and regulatory authorities. The guidance provides recommendations for activities to support patient involvement in HTA bodies and specific guidance for individual HTA processes. It seeks to improve patient involvement, using the outcomes of published research and consensus-building exercises. It also draws on good practice examples from individual HTA bodies. The guidance is not intended to be prescriptive and should be used according to specific circumstances, national legislation, or the unique needs of each interaction. This article represents the formal publication of the HTA guidance text with discussion about recent progress in, and continuing barriers to, patient involvement in HTA.

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Section: Discussionmentioning

confidence: 99%

EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment

et al. 2018

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“…A total of 56 frameworks were written up in 55 academic papers. 5,10,12,31,[33][34][35][36][38][39][40][41][42][43][44][45][47][48][49][50]52,53,[55][56][57][60][61][62][63][64][65][66][67][69][70][71][72][73][74][75][76][77][78][79][80][81][82][83][84][87][88][89][90]…”

Section: Description Of Data Setmentioning

confidence: 99%

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Greenhalgh

Hinton

Finlay

et al. 2019

Health Expectations

495

650

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Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.

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“…As suggested by Pullin et al [48], there is an opportunity to bring individuals who use AAC into the design team from the outset, rather than as the final testers. This approach aligns with the new emphasis on patient or public involvement in health care services generally [80, 81] as well as in research [82]. …”

Section: New Opportunities In Technological Innovationsmentioning

confidence: 99%

Innovations for Supporting Communication: Opportunities and Challenges for People with Complex Communication Needs

Smith¹

2019

Folia Phoniatr Logop

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Individuals with complex communication needs have benefited greatly from technological innovations over the past two decades, as well as from social movements that have shifted focus from disability to functioning and participation in society. Three strands of technological innovation are reviewed in this paper: (1) innovations in the tools that have become available, specifically tablet technologies; (2) innovations in access methods (eye gaze technologies and brain-computer interfaces); and (3) innovations in output, specifically speech technologies. The opportunities these innovations offer are explored, as are some of the challenges that they imply, not only for individuals with complex communication needs, but also for families, professionals, and researchers.

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Public and Patient Involvement in Health Technology Assessment: A Framework for Action

Cited by 107 publications

References 27 publications

EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment

EUPATI Guidance for Patient Involvement in Medicines Research and Development: Health Technology Assessment

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

Innovations for Supporting Communication: Opportunities and Challenges for People with Complex Communication Needs

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