Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards

Fruytier, Sevgi E.; Vat, Lidewij Eva; Camp, Rob; Houÿez, François; Keyser, Hilde De; Dunne, Denise; Marchi, Davide; McKeaveney, Laura; Pitt, Richard H.; Pittens, Carina A. C. M.; Vaughn, Meagan F; Журавлева, Е.В.; Schuitmaker-Warnaar, Tjerk Jan

doi:10.17294/2330-0698.1859

Cited by 7 publications

(7 citation statements)

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“… 12 However, there is limited evidence of the influence of PE at each research stage and critical task in the context of qualitative research from the perspective of multiple stakeholders. This could be due to the many different factors that influence the causal chains leading to impact such as the skills, assumptions, values, and priorities of the stakeholders involved 13 as well as the limitations in scope (e.g., measuring patient experience not impact on the research) and/or rigorous evaluation tools to measure PE (e.g., few measurement properties). There are also not many validated evaluation tools that are publicly available, informed by the literature and grounded in a theoretical or conceptual framework, inclusive of patient involvement in their development and reporting.…”

Section: Introductionmentioning

confidence: 99%

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Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Marshall,

Suryaprakash,

Bryan

et al. 2023

Journal of the Canadian Association of Gastroenterology

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Background Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

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Section: Introductionmentioning

confidence: 99%

“…There are also not many validated evaluation tools that are publicly available, informed by the literature and grounded in a theoretical or conceptual framework, inclusive of patient involvement in their development and reporting. 13–16 None provide a comprehensive picture of the impact across the whole research cycle.…”

Section: Introductionmentioning

confidence: 99%

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Marshall,

Suryaprakash,

Bryan

et al. 2023

Journal of the Canadian Association of Gastroenterology

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“…However, certain questions remain as to which values to emphasize, and how patients can be better engaged as valued partners in health research. [23][24][25] This need led the Gynecologic Cancer InterGroup (GCIG) Harmonisation Operations Committee to conduct a survey focusing on the extent of patient involvement across the clinical research activities of each research group involved in GCIG. The survey also aimed to identify challenges to increased levels of patient involvement in the research being developed, predominantly facilitated through the consortium's strategic planning activities.…”

Section: Introductionmentioning

confidence: 99%

“…They opine that stronger evidence of specific patient and healthcare system outcomes is required. However, certain questions remain as to which values to emphasize, and how patients can be better engaged as valued partners in health research 23–25 …”

Section: Introductionmentioning

confidence: 99%

Patient involvement in research within the Gynecological Cancer InterGroup: A call to action for a systematic approach: Results from a survey

Nohová,

Andrews,

Votan

et al. 2023

Health Science Reports

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Background and AimsInvolving patients in research, not only as trial subjects, is not a newly established practice. Over the last two decades, patient roles have gradually expanded to become active research contributors, creating a more patient‐centered research landscape. Our survey has explored the scope of patient involvement within the Gynecologic Cancer InterGroup (GCIG), an International Gynecologic Cancer Research Consortium, and identified challenges in developing a systematic, meaningful and sustainable level of patient involvement.MethodsIn late 2019, the GCIG Harmonisation Operations Committee conducted an online survey across 26 national and/or international research cooperative groups, aiming to identify current patient involvement practices implemented by each group. Twelve questions were asked. The results have been generated to support a systematic strategic planning process to increase patient involvement into clinical research projects.ResultsMore than half of the 26 participating groups have either already involved (15, [58%]) or are planning (6, [23%]) to involve patients in their research activities. Gaining patient support in raising public awareness around clinical trials appears to be one of the most desired benefits (21, [81%]). Ten respondents managed to integrate patient involvement into their standard practice. When involving patients in research the groups mostly consider that patients bring added value to the study (19, [73%]), although only eight groups (40%) have a well‐organized process in doing so.ConclusionEven though patient involvement is considered a significant added value to clinical research, its application within GCIG groups is not considered on a regular basis and is predominantly limited to operational aspects of research activities. The lack of resources and expertize, as well as the missing well‐organized and structured process of some groups, combined with their ability to ensure process sustainability, are among the main factors affecting implementation and adoption of patient involvement within GCIG research activities.

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“…There are fewer publications on the impact and outcomes of research engagement 6 9 10. This could be attributed to the lack of validated evaluation tools that are publicly available, informed by the literature and grounded in a theoretical or conceptual framework, inclusive of patient involvement in their development and reporting 11–14. Some studies report hypothesised impacts instead of presenting evidence of impact 8 15.…”

Section: Introductionmentioning

confidence: 99%

Exploring the outcomes of research engagement using the observation method in an online setting

Marshall,

Suryaprakash,

Lavallee

et al. 2023

BMJ Open

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ObjectiveThe objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research.DesignWe observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis.SettingThe study was conducted online.ParticipantsPatient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study.Main outcome measuresTranscripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE.ResultsBoth projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups.ConclusionsOur findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.

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Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards

Cited by 7 publications

References 0 publications

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Patient involvement in research within the Gynecological Cancer InterGroup: A call to action for a systematic approach: Results from a survey

Exploring the outcomes of research engagement using the observation method in an online setting

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