Supporting health researchers to realize meaningful patient involvement in research: Exploring researchers’ experiences and needs

Harmsen, Simone; Pittens, Carina A. C. M.; Vroonland, Eva; Rensen, A. J. M. L. Van; Broerse, Jacqueline E W

doi:10.1093/scipol/scac024

Cited by 8 publications

(5 citation statements)

References 40 publications

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“…In addition, we found training was not consistent across PPIE members; they did not seem to be offered training routinely or asked if they felt they would benefit from any training [ 35 ]. We also found variation in the training on PPIE carried out by researchers and, this study identifies the need for training for both researchers and PPIE members which is common to all involvement in relation to increasing diversity, being responsive to PPIE members and the need for clearer guidelines [ 8 ]. Whilst other studies have demonstrated that training researchers on the practicalities of working with PPIE members has shown to increase confidence and likelihood of involving patients and the public in research [ 36 ] this is not always common practice, and the training did not include strategies for rapid research.…”

Section: Discussionmentioning

confidence: 99%

“…Involvement differs from participation in that the patients and members of the public being involved, contribute to the research process as advisors [ 3 ]. In this paper, we argue PPIE should be ‘meaningful’ which is based on principles of valuing partnerships, cultivating learning, identifying training needs and resources of researchers and PPIE members, and being responsive to patients and public members [ 8 ]. Researchers have argued that meaningful engagement is a complex process that often takes time and is based on building trust and rapport between researchers, patients, and members of the public [ 9 , 10 ].…”

Section: Introductionmentioning

confidence: 99%

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The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

2022

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Introduction Rapid qualitative studies conducted with patient and public involvement can help promote policy-relevant and efficient research. There is a need to understand the experiences of researchers, patients, and members of the public to guide the development of good practice and to determine the extent to which rapid qualitative research can be implemented in PPIE projects. Methods We conducted a qualitative study to explore the experiences of research teams that carried out studies using rapid techniques with patient and public involvement. We carried out 26 interviews with researchers, coordinators, patients, carers, service users and members of the public. Results This study identified needs which related to practical and time constraints. Rapid qualitative research tends to be limited to certain PPIE groups, and particular phases of the research process. Study findings are rarely discussed with PPIE members. The educational needs of rapid qualitative research were also identified. Researchers and PPIE members considered three main issues: a lack of training on patient involvement for researchers, rapid qualitative research training for PPIE members, and the diversity of PPIE members. Conclusion We found that rapid researchers were able to involve patients and members of the public in research despite time pressures. The challenges identified in this study can be used to plan future training programmes for researchers and PPIE panel members and develop strategies to recruit PPIE panel members from a wide range of backgrounds. Public contribution The research aim was to explore the experiences of those carrying out rapid qualitative studies with PPIE. As such, the participants of this study included patients, carers, service users and members of the public, who were interviewed individually. A lived experienced researcher and PPIE member for a hospital conducted the design, data collection and analysis of the study. The study brief was to interview researchers only. The lived-experience researcher initiated the inclusion of PPIE members as participants, therefore strengthening the study design. We shared the draft report with the PPIE participants for participant validation and to maintain a continuous feedback relationship. This led to addressing key issues in designing and involving PPIE members in more meaningful and equal ways. Whilst there is agreement on activities which centre on PPIE, there is no consensus on how to achieve these in high quality rapid qualitative studies.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

2022

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“…Patient partnerships are increasingly recognized as central to designing health care interventions, and already feature prominently in research design, health policy and medical education in other countries. 16 , 18 , 19 Studies examining patient experiences of clinical empathy have also been primarily restricted to specific illness contexts. 20 – 22 However, we hypothesize that patients’ experiences of clinical empathy are not unique to particular diagnoses and that it is these universal factors that are the most useful in informing undergraduate medical education, since they are relevant to all future clinicians.…”

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confidence: 99%

“…Patient partnerships are increasingly recognized as central to designing health care interventions, and already feature prominently in research design, health policy and medical education in other countries. 16,18,19 Studies examining Clinical empathy as perceived by patients with chronic illness in Canada: a qualitative focus group study…”

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confidence: 99%

Clinical empathy as perceived by patients with chronic illness in Canada: a qualitative focus group study

Gertsman,

Ene,

Palmert

et al. 2023

cmajo

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Background: Although clinical empathy — the ability of a physician to understand a patient’s illness experience, communicate this understanding and act collaboratively to create a treatment plan — provides substantial benefits to both physicians and patients, medical students typically experience a decline in empathy during training. The primary objective of this study was to generate a model of clinical empathy grounded in the perspectives of people with chronic illness living in Canada, to promote empathy-focused curricular development in Canadian medical education. Methods: We conducted a qualitative focus group study using a constructivist grounded theory approach. We recruited adults (age ≥ 18 yr) with chronic illness who had recently seen a physician in Canada from virtual support groups. Six semistructured virtual focus groups with 3–5 participants each were scheduled between June and September 2021. We coded the transcripts using the constant comparative method, allowing for the construction of an overarching theory. Results: Twenty patients (17 women and 3 men) participated in the focus groups; 1 group had 2 participants because 1 participant failed to appear. The majority of participants (14 [70%]) had at least a college degree. The mean rating for overall satisfaction with the Canadian health care system was 5.4/10.0 (median 5.0). The emergent theory showed that the perceived presence of physician empathy engendered positive internal processing by patients, leading to increased health care efficacy and enhanced mental health outcomes. Negative patient processing in response to the perceived absence of empathy led to reduced quality of health care delivery (e.g., ineffective referrals and more appointments), increased use of health care resources, disruptions in patients’ personal lives, and negative physical and mental health outcomes. Interpretation: Clinical empathy can have life-altering impacts on patients, and its absence may increase resource use. As empathy involves understanding patients’ lived experiences, any valid intervention to improve clinical empathy must be informed by patient perspectives.

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“…Bing-Jonsson et al (2015) involved patient representatives during the content validation stage. Involving patients or public representatives could add value to the instrument by including not only healthcare professionals' expectations and experiences but also those who are receiving the care(Harmsen et al, 2022;Skovlund et al, 2020).…”

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confidence: 99%

A hybrid systematic narrative review of instruments measuring home‐based care nurses' competency

Rusli,

Chua,

Ang

et al. 2023

Journal of Advanced Nursing

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AimThe aim of the study was to identify and synthesize the contents and the psychometric properties of the existing instruments measuring home‐based care (HBC) nurses' competencies.DesignA hybrid systematic narrative review was performed.Review MethodsThe eligible studies were reviewed to identify the competencies measured by the instruments for HBC nurses. The psychometric properties of instruments in development and psychometric testing design studies were also examined. The methodological quality of the studies was evaluated using the Medical Education Research Study Quality Instrument and COSMIN checklist accordingly.Data SourcesRelevant studies were searched on CINAHL, MEDLINE (via PubMed), EMBASE, PsychINFO and Scopus from 2000 to 2022. The search was limited to full‐text items in the English language.ResultsA total of 23 studies reporting 24 instruments were included. 12 instruments were adopted or modified by the studies while the other 12 were developed and psychometrically tested by the studies. None of the instruments encompassed all of the 10 home‐based nursing care competencies identified in an earlier study. The two most frequently measured competencies were the management of health conditions, and critical thinking and problem‐solving skills, while the two least measured competencies were quality and safety, and technological literacy. The content and structural validity of most instruments were inadequate since the adopted instruments were not initially designed or tested among HBC nurses.ConclusionThis review provides a consolidation of existing instruments that were used to assess HBC nurses' competencies. The instruments were generally not comprehensive, and the content and structural validity were limited. Nonetheless, the domains, items and approaches to instrument development could be adopted to develop and test a comprehensive competency instrument for home‐based nursing care practice in the future.ImpactThis review consolidated instruments used to measure home‐based care nurses' competency. The instruments were often designed for ward‐based care nurses hence a comprehensive and validated home‐based nursing care competency instrument is needed. Nurses, researchers and nursing leaders could consider the competency instruments identified in this review to measure nurses' competencies, while a home‐based nursing care competency scale is being developed.Patient or Public ContributionNo patient or public contribution was required in this review.

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Supporting health researchers to realize meaningful patient involvement in research: Exploring researchers’ experiences and needs

Cited by 8 publications

References 40 publications

The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures?

Clinical empathy as perceived by patients with chronic illness in Canada: a qualitative focus group study

A hybrid systematic narrative review of instruments measuring home‐based care nurses' competency

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