Engaging patients in primary care design: An evaluation of a novel approach to codesigning care

Hertel, Erin; Cheadle, Allen; Matthys, Juno; Coleman, Katie; Gray, Marlaine Figueroa; Robbins, Michele; Tufte, Janice; Hsu, Clarissa

doi:10.1111/hex.12909

Cited by 17 publications

(19 citation statements)

References 19 publications

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“…Other strategies that helped to optimize engagement included having patient partner input as a standing agenda item for all meetings, and allowing ample time for patient partners to ask questions during meetings to ensure that patient partners did not feel rushed or inhibited in any way. Holding face-to-face meetings, building-in time in the agenda for researchers and partners to socialize, and avoiding the use of jargon, acronyms and clinical or academic language were also important, 42 , 43 …”

Section: Lessons Learnedmentioning

confidence: 99%

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Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Markle‐Reid

Ganann

Ploeg

et al. 2021

Journal of Multimorbidity and Comorbidity

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Background: Patient “engagement” in health research broadly refers to including people with lived experience in the research process. Although previous reviews have systematically summarized approaches to engaging older adults and their caregivers in health research, there is currently little guidance on how to meaningfully engage older adults with multimorbidity as research partners. Objectives: This paper describes the lessons learned from a patient-oriented research program, the Aging, Community and Health Research Unit (ACHRU), on how to engage older adults with multimorbidity as research partners. Over the past 7-years, over 40 older adults from across Canada have been involved in 17 ACHRU projects as patient research partners. Methods: We developed this list of lessons learned through iterative consensus building with ACHRU researchers and patient partners. We then met to collectively identify and summarize the reported successes, challenges and lessons learned from the experience of engaging older adults with multimorbidity as research partners. Results: ACHRU researchers reported engaging older adult partners across many phases of the research process. Five challenges and lessons learned were identified: 1) actively finding patient partners who reflect the diversity of older adults with multimorbidity, 2) developing strong working relationships with patient partners, 3) providing education and support for both patient partners and researchers, 4) using flexible approaches for engaging patients, and 5) securing adequate resources to enable meaningful engagement. Conclusion: The lessons learned through this work may provide guidance to researchers on how to facilitate meaningful engagement of this vulnerable and understudied subgroup in the patient engagement literature.

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Section: Lessons Learnedmentioning

confidence: 99%

“…This is consistent with other studies that stress the importance of matching patient experience, skills and background to the specific needs of the research to ensure that patient contributions are valued. 43 …”

Section: Lessons Learnedmentioning

confidence: 99%

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Markle‐Reid

Ganann

Ploeg

et al. 2021

Journal of Multimorbidity and Comorbidity

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“…For example, papers reported that the desire of both patients and staff to improve services was essential to success 24 51 52 and was often personally rewarding. [53][54][55] This motivation led to a sustained commitment to QI partnerships 9 51 53 and increasingly sophisticated levels of engagement. 53 The importance of patients and staff being Self-aware and reflective was also discussed.…”

Section: Personal Attributes Domainmentioning

confidence: 99%

Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review

et al. 2021

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BackgroundInternationally, patient and public involvement (PPI) is core policy for health service quality improvement (QI). However, authentic QI partnerships are not commonplace. A lack of patient and staff capability to deliver successful partnerships may be a barrier to meaningful QI collaboration.ObjectivesThe research questions for this scoping review were: What is known regarding the capabilities required for healthcare staff and patients to effectively partner in QI at the service level?; and What is known regarding the best practice learning and development strategies required to build and support those capabilities?MethodsA six-stage scoping review was completed. Five electronic databases were searched for publications from January 2010 to February 2020. The database searches incorporated relevant terms for the following concepts: capabilities for PPI in healthcare QI; and best practice learning and development strategies to support those capabilities. Data were analysed using descriptive statistics and qualitative content analysis.ResultsForty-nine papers were included. Very little peer-reviewed literature focused explicitly on capabilities for QI partnerships and thus implicit paper content was analysed. A Capability framework for successful partnerships in healthcare quality improvement was developed. It includes knowledge, skills and attitudes across three capability domains: Personal Attributes; Relationships and Communication; and Philosophies, Models and Practices, and incorporates 10 capabilities. Sharing power and leadership was discussed in many papers as fundamental and was positioned across all of the domains. Most papers discussed staff and patients’ co-learning (n=28, 57.14%). Workshops or shorter structured training sessions (n=36, 73.47%), and face-to-face learning (n=34, 69.38%) were frequently reported.ConclusionThe framework developed here could guide individualised development or learning plans for patient partners and staff, or could assist organisations to review learning topics and approaches such as training content, mentoring guidelines or community of practice agendas. Future directions include refining and evaluating the framework. Development approaches such as self-reflection, communities of practice, and remote learning need to be expanded and evaluated.

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“…Patient involvement in the development of care pathways is increasing 3,5 . Patients have been acknowledged for their unique experiences that can contribute to research‐based quality improvement 6,7 .…”

Section: Introductionmentioning

confidence: 99%

“…4 Patient involvement in the development of care pathways is increasing. 3,5 Patients have been acknowledged for their unique experiences that can contribute to research-based quality improvement. 6,7 Funding bodies require patient and public involvement (PPI) such as Control in Australia.…”

Section: Introductionmentioning

confidence: 99%

Improving the experience of older people with colorectal and breast cancer in patient‐centred cancer care pathways using experience‐based co‐design

Moser

Melchior

Veenstra³

et al. 2021

Health Expectations

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Background Patient and public involvement (PPI) in quality improvement of oncological care pathways for older patients are rare. Objectives Improve the care pathway experience of older cancer patients and explore lessons learned regarding how to engage this vulnerable group. Design Experience‐Based Co‐Design. Setting and participants: Older cancer patients, their caregivers and healthcare professionals within colorectal and breast cancer care pathways. Interventions: Co‐design quality improvement teams. Main outcome measures: Colorectal cancer care pathway touchpoints were (a) availability of a contact person during diagnostic, treatment and aftercare phases; (b) collaboration between physicians and different hospital departments; (c) continuous relationship with same physician; (d) respectful treatment; (e) and information transfer with primary care. Breast cancer care pathway touchpoints were (a) comprehensive information package and information provision, (b) care planning based on patient preferences, (c) continuity of patient–professional relationship and (d) specialized care in case of vulnerability. Challenges related to PPI included (a) ability of older cancer patients to be reflective, critical and think at a collective level; (b) gaining support and commitment of professionals; (d) overcoming cultural differences and power inequalities; and (e) involving researchers and facilitators with appropriate expertise and position. Conclusion This multidisciplinary quality improvement project revealed several challenges of PPI with older cancer patients and their caregivers. Research teams themselves need to assume the role of facilitator to enable meaningful PPI of older cancer patients. Patient or Public Contribution Patient and caregiver representatives and advocates were involved in the design, conduct, analysis, interpretation of the data and preparation of this manuscript.

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Engaging patients in primary care design: An evaluation of a novel approach to codesigning care

Cited by 17 publications

References 19 publications

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review

Improving the experience of older people with colorectal and breast cancer in patient‐centred cancer care pathways using experience‐based co‐design

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