Involving patient in the early stages of health technology assessment (HTA): a study protocol

Abstract

BackgroundPublic and patient involvement in the different stages of the health technology assessment (HTA) process is increasingly encouraged. The selection of topics for assessment, which includes identifying and prioritizing HTA questions, is a constant challenge for HTA agencies because the number of technologies requiring an assessment exceeds the resources available. Public and patient involvement in these early stages of HTA could make assessments more relevant and acceptable to them. Involving them in the development of the assessment plan is also crucial to optimize their influence and impact on HTA research. The project objectives are: 1) setting up interventions to promote patient participation in three stages of the HTA process: identification of HTA topics, prioritization, and development of the assessment plan of the topic prioritized; and 2) assessing the impact of patient participation on the relevance of the topics suggested, the prioritization process, and the assessment plan from the point of view of patients and other groups involved in HTA.MethodsPatients and their representatives living in the catchment area of the HTA Roundtable of Université Laval’s Integrated University Health Network (covering six health regions of the Province of Quebec, Canada) will be involved in the following HTA activities: 1) identification of potential HTA topics in the field of cancer; 2) revision of vignettes developed to inform the prioritization of topics; 3) participation in deliberation sessions for prioritizing HTA topics; and 4) development of the assessment plan of the topic prioritized. The research team will coordinate the implementation of these activities and will evaluate the process and outcomes of patient involvement through semi-structured interviews with representatives of the different stakeholder groups, structured observations, and document analysis, mainly involving the comparison of votes and topics suggested by various stakeholder groups.DiscussionThis project is designed as an integrated approach to knowledge translation and will be conducted through a close collaboration between researchers and knowledge users at all stages of the project. In response to the needs expressed by HTA producers, the knowledge produced will be directly useful in guiding practices regarding patient involvement in the early phases of HTA.

Training primary care physicians to offer their patients faecal occult blood testing and colonoscopy for colorectal cancer screening on an equal basis: a pilot intervention with before–after and parallel group surveys

“…First, we aimed at capturing whether the seminar was associated with a change in preferred communication style from paternalistic to informed decision-making. 30 Before the session, we asked PCPs attending: ‘How are decisions made regarding CRC screening in your practice?’; four possible answers were: ‘I take decisions myself according to my understanding of the risks and benefits of screening’, ‘I take the decision myself with strong consideration of the patient's opinion’, ‘I take the decision with the patient on an equal basis’ and ‘The patient takes the decision according to his/her understanding of the risks and benefits of screening’. This same question was asked to PCPs not attending.…”

Is Co-production Just a Pipe Dream for Applied Health Research Commissioning? An Exploratory Literature Review

“…• PPI members are likely to ask whether the research is ethical or moral (Morgan et al, 2005;Staley, 2009;Brett et al, 2014;van Bekkum et al, 2016) • PPI can enhance research practices such as ethical recruitment (Oliver et al, 2009;NIHR CLAHRC, 2017) and transparency (Hutchison et al, 2017) • Researchers develop skills and knowledge in partnership working (Brett et al, 2014;Gagnon et al, 2014) • Involving members of the public can encourage interdisciplinarity (Oliver and Gray, 2006) PPI members contribute skills and knowledge to commissioning decisions…”

“…• The public oversee research and are given access to research information (Greenhalgh et al, 2017) • Research organizations are publicly accountable (Resnik, 2001) personal and mutual understanding; relational empowerment and critical awareness raising among patients; the importance of responsibility, responsiveness and trust; support in working with co-researchers; and the issue of representation (Abma, 2018). Gagnon and colleagues of the Canadian Health Technology Assessment (HTA) programme have generated a conceptual framework for interventions to promote patient involvement in the early stages of HTA (Gagnon et al, 2014). Outcomes of PPI are evaluated with patients and their representatives using interviews and observations.…”

“…Identifying topics • Inviting members of the public to suggest an issue, condition or problem that research could help to address (Oliver et al, 2004;Royle and Oliver, 2004;Menon and Stafinski, 2011; PCORI, 2018) • Responding to an organizational survey or review of future challenges or participating in exercises to identify needs for future research (Moran and Davidson, 2011;Franck et al, 2018) • Patients with a common interest raising issues or bringing issues to the attention of the research community through their engagement with health services or patient networks (Morris et al, 2011;Brady and Preston, 2017) Prioritizing topics • Convened groups (e.g., focus groups) of patients participating in activities to vote for, or rank, priority areas (Husereau et al, 2010;Gagnon et al, 2014;Pittens et al, 2014;Rikkers et al, 2015;NIHR CLAHRC, 2017;Parsons et al, 2017;Rawson et al, 2018;Truitt et al, 2018) • Consensus exercises or dialogue on research priorities (Smith et al, 2005;Abma, 2018) • Patient groups or voluntary organizations putting forward a case for research into topics that are felt to be important (JLA, 2018) • Contributing to developing or implementing a commissioning body's research strategy (Oliver and Gray, 2006;Moran and Davidson, 2011;Gamble et al, 2014;NIHR, 2015) Assessment…”

“…• Patients and their representatives are involved in activities to identify potential HTA topics, review vignettes or research briefs developed to inform the prioritization of topics, participate in deliberation sessions for prioritizing HTA topics, and develop the assessment plan of the topic prioritized (Gagnon et al, 2014) health research. Perhaps most significant, is that professional skepticism and resistance manifest in subtle yet powerful ways that can limit co-production to a pipe dream (Chase et al, 2000).…”