The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study

Blackburn, S.; McLachlan, Sarah; Jowett, Sue; Kinghorn, Philip; Gill, Paramjit; Higginbottom, A.; Rhodes, Carol; Stevenson, Fiona; Jinks, Clare

doi:10.1186/s40900-018-0100-8

Cited by 98 publications

(103 citation statements)

References 22 publications

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“…Despite this perceived importance of assessing the return on patient engagement, little is known about “what” to evaluate, and even less about “how.” A number of researchers have tried to assess how patient engagement makes a difference . Although there is no standardized way to assess the impact of patient engagement, very similar benefits, costs and challenges are reported in literature reviews .…”

Section: Introductionmentioning

confidence: 99%

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat

Finlay

Schuitmaker-Warnaar

et al. 2019

Health Expectations

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Background Showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision‐making points in the medicines research and development process: research priority setting, clinical trial design and early dialogues with regulators and health technology assessment bodies. Objective Our aim was to review the literature on monitoring and evaluation of patient engagement, with a focus on indicators and methods. Search strategy and inclusion criteria We undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut‐off of publications after July 2018. Data extraction and synthesis Data were extracted from 91 publications, coded and thematically analysed. Main results A total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for the evaluation of benefits and costs of patient engagement. Discussion and conclusions Currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.

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Section: Introductionmentioning

confidence: 99%

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Vat

Finlay

Schuitmaker-Warnaar

et al. 2019

Health Expectations

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“…Some themes which were identified resonated with established findings, such as the issue of 'unrepresentative' voices, 49,[55][56][57][58][59][60][61][62][63] as well as numerous other factors more specific to contexts, such as practical barriers to PPI. 15,27,31,55,[64][65][66][67][68][69][70][71][72][73][74][75] The novel findings were related specifically to the role of PPIFs and are the focus of this paper.…”

Section: Finding Smentioning

confidence: 99%

“…Research into PPI has mainly focused on the mechanisms of PPI, the varying perspectives on PPI and the motivations of the patients and public involved . A large body of research focuses on PPI in health research, particularly in more recent years. However, the specific role of patient and public involvement facilitators (PPIFs) remains under‐researched.…”

Section: Introductionmentioning

confidence: 99%

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

Todd

Coupland

Randall

2020

Health Expectations

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Objective Research into patient and public involvement (PPI) has not examined in detail patient and public involvement facilitators’ (PPIFs) roles and activities. This study analysed PPIFs’ roles using qualitative data gathered from three different UK health‐care organizations. Design Thematic analysis was used to examine cross‐sectional data collected using a mixed‐methods approach from three organizations: a mental health trust, a community health social enterprise and an acute hospital trust. The data set comprised of 27 interviews and 48 observations. Findings Patient and public involvement facilitators roles included the leadership and management of PPI interventions, developing health‐care practices and influencing quality improvements (QI). They usually occupied middle‐management grades but their PPIF role involved working in isolation or in small teams. They reported facilitating the development and maintenance of relationships between patients and the public, and health‐care professionals and service managers. These roles sometimes required them to use conflict resolution skills and involved considerable emotional labour. Integrating information from PPI into service improvement processes was reported to be a challenge for these individuals. Conclusions Patient and public involvement facilitators capture and hold information that can be used in service improvement. However, they work with limited resources and support. Health‐care organizations need to offer more practical support to PPIFs in their efforts to improve care quality, particularly by making their role integral to developing QI strategies.

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“…Much of the literature to date has focused on stakeholder engagement in specific tasks such as the development of research agendas or on the involvement of patients and other stakeholders across the phases of discreet CER and PCOR studies . However, effectively engaging stakeholders in the development and oversight of research infrastructure, as required for PCORnet, brings both distinct challenges and corresponding opportunities.…”

Section: Introductionmentioning

confidence: 99%

“…[6][7][8] Much of the literature to date has focused on stakeholder engagement in specific tasks such as the development of research agendas [9][10][11][12][13] or on the involvement of patients and other stakeholders across the phases of discreet CER and PCOR studies. [14][15][16][17] However, effectively engaging stakeholders in the development and oversight of research infrastructure, as required for PCORnet, brings both distinct challenges and corresponding opportunities. In this paper, we describe the process of establishing a Patient and Community Advisory Committee that ensure strict adherence to standards of data security, patient privacy, and research ethics.…”

mentioning

confidence: 99%

Engaging patients, clinicians, and the community in a Clinical Data Research Network: Lessons learned from the CAPriCORN CDRN

Tambor

Shalowitz

Harrington

et al. 2019

Learning Health Systems

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Engaging patients, clinicians, and community members in the development of a research network creates opportunities and challenges beyond engagement in discrete learning activities. This paper describes our experiences establishing and maintaining a stakeholder engagement infrastructure for the Chicago Area Patient‐Centered Outcomes Research Network (CAPriCORN) and highlights important lessons learned over the first 4 years. During this time, the CAPriCORN Patient and Community Advisory Committee (PCAC) appointed patient, clinician, and community representatives to governance and advisory groups throughout the network, developed a process and criteria for patient‐ and clinician‐centered review of research proposals, and evolved from a large, diverse group to a smaller yet still diverse, more actively engaged group with connections to the broader community. Key challenges faced by the PCAC have included determining the optimal size and composition of the group, understanding the complex structure of the network as a whole, coordinating with other network entities and functions, and integrating the patient and community voice into the research review process. Efforts to engage stakeholders in clinical data research networks should anticipate and develop solutions to address these challenges.

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The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study

Cited by 98 publications

References 22 publications

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Evaluating the “return on patient engagement initiatives” in medicines research and development: A literature review

Patient and public involvement facilitators: Could they be the key to the NHS quality improvement agenda?

Engaging patients, clinicians, and the community in a Clinical Data Research Network: Lessons learned from the CAPriCORN CDRN

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