Patient Engagement in Health Research: Perspectives from Patient Participants

Easley, Julie; Wassersug, Richard J.; Matthias, Sharon; Tompson, Margaret; Schneider, Nancy; O’Brien, Mary Ann; Vick, Bonnie; Fitch, Margaret I.

doi:10.3390/curroncol30030210

Cited by 11 publications

(7 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Our success in maintaining virtual engagement over time may be in part due to our use of two helpful frameworks: Carman et al’s Multidimensional Framework for Patient and Family Engagement in Health and Health Care and VAV [ 20 , 21 ]. Both frameworks were developed in partnership with patients and strive to support researchers in partnering with patients in a thoughtful, intentional way, which previous research has shown is critically important [ 19 , 29 ]. While neither was developed specifically for virtual engagement, we found both frameworks to be valuable in planning our engagement approach.…”

Section: Discussionmentioning

confidence: 99%

Sustaining connections: feasibility and impact of long-term virtual patient engagement

Stefanik-Guizlo,

Allen,

Brush

et al. 2024

Res Involv Engagem

View full text Add to dashboard Cite

Background Virtual patient engagement has become more common in recent years. Emerging research suggests virtual engagement can increase accessibility for patients managing long-term health conditions and those living in larger geographic areas, but it can also be challenging to establish relationships and maintain engagement over time. Little is known about virtual engagement lasting more than two years, nor about the specific contributions of patients to virtual engagement projects. Here we describe a project where virtual engagement was sustained over a long period of time (3.5 years), measure patients’ contributions to the work, and describe the facilitators and challenges of the project using the Valuing All Voices (VAV) patient engagement framework. Methods Five researchers recruited four patient partners living with persistent pain to work together virtually on a project to improve care for others with long-term pain. Researchers documented engagement activities and patient partner contributions and categorized them using Carman et al.’s 3 types of engagement. They also collected data via semi-structured group interviews with patient partners about the facilitators and challenges of the project using the VAV framework. Results In 3.5 years, patient partners contributed 487 h to the project, averaging 3.0 h per month, and participated in 40 meetings. They contributed to 17 products for patients, health care teams, and researchers. Most products (12 of 17) were created using the more in-depth engagement approaches of involvement or partnership and shared leadership. The group identified facilitators of the project across the five VAV domains of relationship-building, trust, understanding & acceptance, education & communication, and self-awareness, as well as some specific challenges such as keeping track of products across virtual platforms and managing the high volume of project information. Conclusions Long-term virtual patient engagement is feasible and can use more in-depth engagement approaches. Additionally, it can result in substantial contributions from patients in terms of time, effort, and products. These findings can inform future long-term virtual patient engagement efforts and provide insight into how researchers can structure their activities to encourage and maintain deep engagement over time.

show abstract

Section: Discussionmentioning

confidence: 99%

Sustaining connections: feasibility and impact of long-term virtual patient engagement

Stefanik-Guizlo,

Allen,

Brush

et al. 2024

Res Involv Engagem

View full text Add to dashboard Cite

show abstract

“…Responsiveness of the research team (and how parents valued this) was a major theme within the qualitative data. The importance of assessing the effectiveness of patient engagement approaches and being responsive to feedback through adjustments and improvement has been previously highlighted in the literature as critical to achieve engagement [ 21 – 23 ].…”

Section: Discussionmentioning

confidence: 99%

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health

Hartling,

Elliott,

Mabbott

et al. 2024

Res Involv Engagem

View full text Add to dashboard Cite

Background In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period. Methods We conducted year-end surveys and interviews of group members to understand parents’ perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically. Results Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group’s purpose, offering sufficient context for discussion items, and providing feedback about how members’ input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group’s current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group’s membership and an interest in hearing more about how the research program’s activities fit into the broader healthcare system and their impacts on health outcomes. Conclusions Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.

show abstract

“…Future qualitative research on real experiences should also be encouraged to document the local challenges of PPI in scaling as experienced on the ground. 78 …”

Section: Discussionmentioning

confidence: 99%

Strategies for involving patients and the public in scaling initiatives in health and social services: A scoping review

de Carvalho Corôa,

Ben Charif,

Robitaille

et al. 2024

Health Expectations

View full text Add to dashboard Cite

BackgroundScaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries’ interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS.MethodsIn this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2).FindingsWe included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty‐four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher‐income countries (n = 51). Community‐based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist‐utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30).ConclusionsPPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way.Patient and Public ContributionTwo patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination.Review RegistrationOpen Science Framework on 19 August 2020 (https://osf.io/zqpx7/).

show abstract

Patient Engagement in Health Research: Perspectives from Patient Participants

Cited by 11 publications

References 27 publications

Sustaining connections: feasibility and impact of long-term virtual patient engagement

Sustaining connections: feasibility and impact of long-term virtual patient engagement

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health

Strategies for involving patients and the public in scaling initiatives in health and social services: A scoping review

Contact Info

Product

Resources

About