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Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research.

ABSTRACT: Background:Efforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health research projects in Newfoundland and Labrador, Canada, and 2) learn more about how to best monitor and evaluate patient engagement. This paper presents the results of our participatory evaluation study and the lessons learned. The evaluation of the projects was driven by questions patients wanted answered. Methods:We conducted a formative evaluation of patient engagement in health research projects. Projects spanned a variety of topics, target groups, research designs and methods of patient engagement. Participants included principal investigators (n =?6) and their patient partners (n =?14). Furthermore, graduate students (n =?13) working on their own research projects participated. Participants completed an online survey with closed and open-ended questions about their patient engagement efforts, experiences and preliminary outcomes. Patients were involved as co-investigators in the entire evaluation study. We used qualitative methods to evaluate our participatory process. Results:The evaluation study results show that most patients and researchers felt prepared and worked together in various phases of the research process. Both groups felt that the insights and comments of patients influenced research decisions. They believed that patient engagement improved the quality and uptake of research. Students felt less prepared and were less satisfied with their patient engagement experience compared to researchers and their patient partners. Involvement of patient co-investigators in this evaluation resulted in learnings, transparency, validation of findings and increased applicability. Challenges were to select evaluation questions relevant to all stakeholders and to adapt evaluation tools to local needs. Conclusions:Our findings show that researchers, patient partners and students value patient engagement in health research. Capacity building at the supervisor level in academic institutions is needed to better support students. Sufficient time is also needed to permit observable outcomes. Participatory evaluation may increase the relevance and usefulness of information, but it also raises issues such as who defines and designs the content of evaluation tools. A co-creation process is required to develop appropriate monitoring and evaluation strategies.

SUBMITTER: Vat LE

PROVIDER: S-EPMC7350650 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research.

Vat Lidewij Eva LE Warren Mike M Goold Susan S Davidge Everard Bud EB Porter Nicole N Schuitmaker-Warnaar Tjerk Jan TJ Broerse Jacqueline E W JEW Etchegary Holly H

Research involvement and engagement 20200709

<h4>Background</h4>Efforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health research projects in Newfoundland and Labrador, Canada, and 2) learn more about how to best monitor and evaluate patient engagement. This paper presents the results of our participatory evaluation study and the lessons learned. The evaluation of the projects was driven by ques ...[more]

PMID: 32670610

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Project description:BackgroundPartnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities.ObjectiveOur objective was to create a public interest group through an academic-community partnership focused on cancer research and public engagement.MethodsA purposeful recruitment process was implemented to ensure a diverse and inclusive group. The group meets virtually and communicates by email. The group's activities focus on identifying the needs, priorities, and interests of cancer-affected individuals in the province; consultations; and designing research projects and public outreach activities together. Comprehensive meeting minutes are kept and used to distill discussion points. The work of the group is disseminated through a variety of channels.ResultsThe public interest group includes 12 cancer patient and family member representatives, in addition to researchers. Discussions by the interest group identified key themes related to: (1) equity issues and regional disparity in provincial oncocare; (2) information needs; (3) need for patient empowerment and public understanding; and (4) family member and partner needs and experiences. To date, the group has co-designed a cancer research proposal and a public engagement/outreach activity. The group also provides consultations on cancer-related projects/public engagement activities and members act as patient partners in specific research and public engagement proposals. The group evolves over time, and increasingly advocates on behalf of cancer patients and families. Retention and satisfaction of the public partners with group activities have been high. The group's work and findings are disseminated to the Provincial Cancer Care Program, as well as to public and scientific stakeholders through local media, academic conferences and presentations, and a dedicated website.ConclusionPublic Interest Group on Cancer Research represents a highly successful patient-researcher partnership in oncology. It designs meaningful and patient-oriented studies and outreach activities in cancer. It also elevates and widely supports cancer patient and family voice.

Project description:OBJECTIVE:There is a need for structure to achieve functional patient engagement within mental healthcare organizations, and for clarification on how to proceed on a strategic level. The aim of this paper is to shed light on the implementation of a strategic organizational structure for patient engagement in mental health by examining why and how to implement a structure, the organizational and environmental factors that facilitate or limit the process, and the perceived consequences of the implementation. METHOD:This paper evaluates the implementation of a strategic committee for patient engagement in a mental healthcare organization in Montreal (Quebec, Canada). The research was designed as a qualitative single case study using a deductive approach by means of a conceptual framework. Data sources consisted in ten semi-structured interviews, three focus groups, and organizational documents. RESULTS:The strategic committee for patient engagement was implemented as a means to formalize patient partner participation, following the introduction of a vision of full citizenship. Important aspects of its implementation included its composition and role, the elaboration of a framework for patient partner participation, and finally, ongoing application and evaluation of the framework. Several facilitating factors were identified, including executive management support, leadership, and a vision behind the participation. Limiting factors mainly consisted of resistance towards patient participation and the existence of stigma. Consequences included increased and improved patient engagement, as well as reduced stigma within the organization. CONCLUSION:This study shows that the implementation of a strategic organizational structure for patient engagement is comprehensive. It further shows the importance of a vision and an articulate leadership involving several actors. Further research is needed regarding the impact of this type of strategic structure on a clinical level.

Project description:ObjectivesTo identify a broad range of research priorities to inform the studies seeking to improve population health outcomes based on the engagement of diverse stakeholders.MethodsA multi-step, participatory and mixed-methods approach was adopted to solicit and structure the investigative themes from diverse stakeholders. The priority setting exercise involved four key phases: (1) feedback from community leadership; (2) interim ranking survey and focus group discussions during the population health symposium; (3) individual in-depth interviews with stakeholders in the community; and (4) synthesis of the research priorities from the multistep process.ResultsDiverse stakeholders in Singapore, comprising community partnership leaders, health care and social service providers, users of population health services, patients and caregivers, participated in the research priority setting exercise. Initial 14 priorities were identified from six community leadership feedback, 42 survey responses, two focus groups (n = 16) and 95 in-depth interviews. The final integrated research agenda identified six priorities: empower residents and patients to take charge of their health; improve care transition and management through relationship building and communication; enhance health-social care interface; improve respite care services for long-term caregivers; develop primary care as a driving force for care integration; and capacity building for service providers. Selected research questions in each priority area were also generated to develop novel models of care, foster collaboration, implement optimal services and enhance understanding of the end users' care needs.ConclusionsThis study illuminates that greater community engagement in research priority setting for population health can facilitate the formulation of evidence-based research agendas that matter to the care providers and service users in the community. The outcomes derived from this exercise will help focus researchers' efforts through which meaningful gains can be made for population health.

Project description:BackgroundThe growing ethical requirement to engage communities with health research has yielded diversification in approaches and targeted audiences. Conventional approaches like community "town-hall meetings," laboratory open-days and focus group discussions, have evolved into new methods and audiences such as community drama and school engagement with health research (SEHR) involving learning interactions between researchers and school students. While engagement practices are diversifying, evaluations of these initiatives are rare in Low- and Middle-Income Countries (LMIC). This article focuses on the use of Participatory Video (PV) to explore the influence of the KEMRI-Wellcome Trust Research Programme's (KWTRP) School Engagement Programme (SEP) on the views and understandings of science and research among Kenyan state secondary school students.MethodsTwelve male and twelve female students from four coeducational schools were provided with film-making kits (1 per school), and a one-day PV training workshop. They prepared 22 short films over 8 weeks depicting their experiences and views of research and engagement and conveying their career aspirations. Schools were selected based on prior SEP participation; two schools having experienced different engagement approaches, and the others with no prior school engagement. Study data comprised footage and participant observation notes.ResultsPV provided an opportunity to simultaneously engage and evaluate to inform practice. Through student-led filmmaking, PV stimulated conversations with students about research and engagement, enabling them to share their views in a way they felt was appropriate. These interactions offered an understanding of student gains from engagement, the depth of interaction required to address perceptions held about research and the potential unintended consequences of engagement. PV also provided insights into the context and complexity of life in which engagement is situated. Understanding this context is important because of its potential influence on participation in engagement activities. We draw on these insights to make two recommendations for school engagement practice. First is that PV can provide an enjoyable and insightful means of combining engagement with evaluation. Second, given that time for SEHR is competed for against other important curricular and extracurricular activities, SEHR practitioners must ensure that activities are as beneficial and enjoyable as possible to students.

Dataset Information

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research.

Publications

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research.

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