Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study

Abelson, Julia; Tripp, Laura; Kandasamy, Sujane; Burrows, Kristen

doi:10.1111/hex.12949

Cited by 32 publications

(51 citation statements)

References 18 publications

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“…Limitations of this study include the low survey response rates. However, the 37% response rate of the nonpatient partner leads is consistent with the average completion rate of other groups who have utilized the PPEET organizational survey ( 10 ). Furthermore, 3 out of 4 patient partners indicated to the study team that they had submitted the survey; however, only 2 surveys were received suggesting a technical issue existed.…”

Section: Discussionsupporting

confidence: 71%

Evaluation of Patient Engagement in a Clinical Emergency Care Network: Findings From the BC Emergency Medicine Network

Drebit

Eggers²,

Archibald

et al. 2020

Journal of Patient Experience

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The British Columbia Emergency Medicine Network (EM Network) has collaborated with patient partners to utilize their experiential knowledge to inform planning and implementation. Patient partners participated in several EM Network committees and initiatives. This study evaluated how patient partners and other leaders in the EM Network perceived patient engagement efforts 1 year after launch. The Public and Patient Engagement Evaluation Tool V2.0 found that there was an appropriate level of patient engagement at this early stage, an opportunity to attract more patient partners as the EM Network grows, and a need to ensure adequate resources to support more activities.

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Section: Discussionsupporting

confidence: 71%

Evaluation of Patient Engagement in a Clinical Emergency Care Network: Findings From the BC Emergency Medicine Network

Drebit

Eggers²,

Archibald

et al. 2020

Journal of Patient Experience

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show abstract

“…Eligible individuals were sent up to two reminders before the deadline and were contacted within a month of the deadline if they did not complete the survey. The web‐based survey comprised an informed consent page, demographic questions, the 37‐item PEIRS, 16 an item of global meaningful patient engagement in research and the Public and Patient Engagement Evaluation Tool (PPEET) Participant Questionnaire 17 . At the end of the survey, participants were asked to indicate their willingness to complete a second survey within two to seven days for test‐retest reliability.…”

Section: Methodsmentioning

confidence: 99%

“…We used the one‐time engagement version because its phrasing in past tense, as compared to present tense, aligned better with the PEIRS, which was developed for both one‐time and ongoing engagement activities. The PPEET has two demographic items, plus 19 experience items (including six open‐ended items), divided into four groups 17 . We used 10 closed‐ended items that seemed relevant to engagement in research: PP1 to PP3 (items 3 to 5) for ‘communication and support of participation’, PP4 to PP7 (items 7 to 10) for ‘sharing your views and perspectives’, PP8 (item 12) for ‘impacts and influence of engagement initiative’, and PP9 and PP10 (items 17 and 18) for ‘final thoughts’.…”

Section: Methodsmentioning

confidence: 99%

Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement

Hamilton

Hoens

McKinnon

et al. 2021

Health Expectations

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Objective To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients’ and family caregivers’ meaningful engagement as partners in research projects. Methods A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up.

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“…The PPEET consists of three questionnaires (for participants, projects, and organizations) developed by a Canadian collaboration of researchers and public and patient engagement (PPE) practitioners led by McMaster University to evaluate public and patient engagement in health research [ 32 ]. The questionnaires were tested for suitability for implementation in a variety of health system settings, engagement activities, and user groups [ 33 ]. PCORI’s WE-ENACT was developed to describe the role of patients in research projects.…”

Section: Methodsmentioning

confidence: 99%

Patients’ engagement in primary care research: a case study in a Canadian context

2020

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Plain English summary Patient engagement in primary care research is an increasingly common requirement, as it helps make research more relevant to patients and therefore more valuable. However, there is limited evidence about the outcomes on engagement and actually how it affects research. In Canada, the Canadian Institutes of Health Research has a Strategy for Patient-Oriented Research (SPOR), which in 2016 funded Ontario’s INSPIRE-PHC centre of excellence and its Patient Engagement Resource Centre (PERC). PERC conducted an online survey of the three INSPIRE-PHC studies that engaged patients to guide their research. We found that patient partners (PPs) were positive about their experience during research meetings, the value of collaboration, and the support that was provided. They were more involved in early stages of their research projects than in ongoing research activities. PPs valued their experience and also felt they had improved the research process and outcomes. This case study showed how PPs perceive their roles, but a more diverse group of PPs might have more differences in their experience. Abstract Background Patient engagement in primary care research is increasing and is now an expectation in many countries and funding agencies. In Canada, the Canadian Institutes of Health Research (CIHR) has mandated that patients be included as partners to guide the research process. Ontario’s Patient Engagement Resource Centre (PERC) was established in 2016 by the INNOVATIONS STRENGTHENING PRIMARY HEALTH CARE THROUGH RESEARCH (INSPIRE-PHC), one of 12 centres of excellence in the province funded under the CIHR’s Strategy for Patient-Oriented Research (SPOR) initiative. PERC’s mission is to support the authentic engagement of patients in primary care research. The present case study examines patients’ experience of engagement in INSPIRE-PHC research studies. Methods PERC conducted a web-based evaluation survey across the three INSPIRE-PHC studies that engaged patient partners (PPs). We used data collection tools developed by McMaster University (the Public and Patient Engagement Evaluation Tool (PPEET)) and the Patient-Centred Outcomes Research Institute (Ways of Engaging- ENgagement ACtivity Tool (WE-ENACT)) to assess patient experience and areas of involvement. These included both closed- and open-ended questions. Results The quantitative data showed that PPs were positive about their experience during research meetings, the value of collaboration, and the support that was provided to facilitate engagement. Most of them were highly involved in the initial stages of their research projects but much less involved in operational activities. The qualitative findings showed that, overall, PPs valued their experience, felt prepared to contribute and that their contributions were welcomed. In particular, they considered that they had improved the research process and outcomes. The majority also reported that they had learned from the experience and found it valuable. Conclusions This case study shows that patients engaged in three primary care research studies found the experience to be positive and felt that they had contributed to the research. This study adds to the literature on the evaluation of patient engagement in primary health care research. However, a study of a more diverse sample of PPs might elucidate differences in experience that could enrich future patient engagement activities.

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Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study

Cited by 32 publications

References 18 publications

Evaluation of Patient Engagement in a Clinical Emergency Care Network: Findings From the BC Emergency Medicine Network

Evaluation of Patient Engagement in a Clinical Emergency Care Network: Findings From the BC Emergency Medicine Network

Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement

Patients’ engagement in primary care research: a case study in a Canadian context

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