Abstract:BackgroundEmbedding Public and Patient Involvement (PPI) in postgraduate research has been recognized as an important component of post-graduate training, providing research scholars with an awareness and a skillset in an area which prepares them for future roles as healthcare researchers. Improving Pathways for Acute STroke And Rehabilitation (iPASTAR) is a structured PhD training program [Collaborative Doctoral Award (CDA)] which aims to design a person-centered stroke pathway throughout the trajectory of st… Show more
“…In addition, 12 published manuscripts were identified from a specific citation search; these were included as a compendium to the original record identified in the search (ie, full-text papers to support conference abstracts). In total, 35 records 62 , 63 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 were included in the final review. Figure 1 Preferred Reporting Items for Systematic Reviews and Meta-Analyses ( PRISMA) 2020 flow diagram.…”
Section: Resultsmentioning
confidence: 99%
“…The 35 records represent data from 474 community and patient partners 62 , 63 , 67 , 68 , 70 , 71 , 73 , 74 , 75 , 76 , 77 , 78 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 89 , 90 , 91 , 96 , 97 , 98 , 99 who completed studies, including a total of 417 (88%) female partners. Of the 35 papers, the majority originated in the US (n = 16; 46%), 68 , 71 , 72 , 73 , 76 , 77 , 79 , 81 , 83 , 84 , 87 , 90 , 93 , 94 , 95 , 96 Canada ( n = 7; 20%), 62 , 63 , 69 , 70 , 74 , 75 , 98 and the UK (n = 6; 17%).…”
“…In addition, 12 published manuscripts were identified from a specific citation search; these were included as a compendium to the original record identified in the search (ie, full-text papers to support conference abstracts). In total, 35 records 62 , 63 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 were included in the final review. Figure 1 Preferred Reporting Items for Systematic Reviews and Meta-Analyses ( PRISMA) 2020 flow diagram.…”
Section: Resultsmentioning
confidence: 99%
“…The 35 records represent data from 474 community and patient partners 62 , 63 , 67 , 68 , 70 , 71 , 73 , 74 , 75 , 76 , 77 , 78 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 89 , 90 , 91 , 96 , 97 , 98 , 99 who completed studies, including a total of 417 (88%) female partners. Of the 35 papers, the majority originated in the US (n = 16; 46%), 68 , 71 , 72 , 73 , 76 , 77 , 79 , 81 , 83 , 84 , 87 , 90 , 93 , 94 , 95 , 96 Canada ( n = 7; 20%), 62 , 63 , 69 , 70 , 74 , 75 , 98 and the UK (n = 6; 17%).…”
“…It is hoped that these findings can be of assistance to ongoing [ 11 , 12 ] and future patient involvement efforts to bring researchers and patients onto the same page from the outset of research projects [ 49 ].…”
Section: Discussionmentioning
confidence: 99%
“…The question of how best to evaluate impact of patient involvement is longstanding and complicated [ 48 , 77 ]. There have been many attempts over the years to answer this question [ 11 , 12 , 23 , 73 , 78 , 79 , 94 – 99 ], but it appears there is no single best approach to measuring the effectiveness, success, or impact of involvement [ 100 ], and perhaps such a measure will never exist. However, ongoing efforts to develop and validate consistent patient involvement evaluation measures are encouraged to facilitate the comparison of different involvement strategies and gain some indication of which might be the most promising in a given context, when resources are limited and ought to be allocated to the most promising strategy [ 101 ].…”
Background and aims
There is increasing recognition of the importance of patient involvement in research. In recent years, there has also been growing interest in patient partnerships with doctoral studies students. However, it can be difficult to know where to start and how to go about such involvement activities. The purpose of this perspective piece was to share experiential insight of the experience of a patient involvement program such that others can learn from this experience.
Body
This is a co-authored perspective piece centred on the experience of MGH, a patient who has had hip replacement surgery, and DG, a medical student completing a PhD, participating in a Research Buddy partnership over the course of over 3 years. The context in which this partnership took place was also described to facilitate comparison with readers’ own circumstances and contexts. DG and MGH met regularly to discuss, and work together on, various aspects of DG’s PhD research project. Reflexive thematic analysis was conducted on reflections from DG and MGH regarding their experience in the Research Buddy program to synthesise nine lessons which were then corroborated with reference to published literature on patient involvement in research. These lessons were: learn from experience; tailor the program; get involved early; embrace uniqueness; meet regularly; build rapport; ensure mutual benefit; broad involvement; regularly reflect and review.
Conclusions
In this perspective piece, a patient and a medical student completing a PhD reflected upon their experience co-designing a Research Buddy partnership within a patient involvement program. A series of nine lessons was identified and presented to inform readers seeking to develop or enhance their own patient involvement programs. Researcher-patient rapport is foundational to all other aspects of the patient’s involvement.
Background
Omission of family and caregiver health spillovers from the economic evaluation of healthcare interventions remains common practice. When reported, a high degree of methodological inconsistency in incorporating spillovers has been observed.
Aim
To promote emerging good practice, this paper from the Spillovers in Health Economic Evaluation and Research (SHEER) task force aims to provide guidance on the incorporation of family and caregiver health spillovers in cost-effectiveness and cost-utility analysis. SHEER also seeks to inform the basis for a spillover research agenda and future practice.
Methods
A modified nominal group technique was used to reach consensus on a set of recommendations, representative of the views of participating subject-matter experts. Through the structured discussions of the group, as well as on the basis of evidence identified during a review process, recommendations were proposed and voted upon, with voting being held over two rounds.
Results
This report describes 11 consensus recommendations for emerging good practice. SHEER advocates for the incorporation of health spillovers into analyses conducted from a healthcare/health payer perspective, and more generally inclusive perspectives such as a societal perspective. Where possible, spillovers related to displaced/foregone activities should be considered, as should the distributional consequences of inclusion. Time horizons ought to be sufficient to capture all relevant impacts. Currently, the collection of primary spillover data is preferred and clear justification should be provided when using secondary data. Transparency and consistency when reporting on the incorporation of health spillovers are crucial. In addition, given that the evidence base relating to health spillovers remains limited and requires much development, 12 avenues for future research are proposed.
Conclusions
Consideration of health spillovers in economic evaluations has been called for by researchers and policymakers alike. Accordingly, it is hoped that the consensus recommendations of SHEER will motivate more widespread incorporation of health spillovers into analyses. The developing nature of spillover research necessitates that this guidance be viewed as an initial roadmap, rather than a strict checklist. Moreover, there is a need for balance between consistency in approach, where valuable in a decision making context, and variation in application, to reflect differing decision maker perspectives and to support innovation.
Supplementary Information
The online version contains supplementary material available at 10.1007/s40273-023-01321-3.
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