Patients as partners in health research: A scoping review

BackgroundThe role of patient involvement in health research has evolved over the past decade. Despite efforts to engage patients as partners, the role is not well understood. We undertook this review to understand the engagement practices of patients who assume roles as partners in health research.MethodsUsing a recognized methodological approach, two academic databases (MEDLINE and EMBASE) and grey literature sources were searched. Findings were organized into one of the three higher levels of engagement, described by the Patient and Researcher Engagement framework developed by Manafo. We examined and quantified the supportive strategies used during involvement, used thematic analysis as described by Braun and Clarke and themed the purpose of engagement, and categorized the reported outcomes according to the CIHR Engagement Framework.ResultsOut of 6621 records, 119 sources were included in the review. Thematic analysis of the purpose of engagement revealed five themes: documenting and advancing PPI, relevance of research, co‐building, capacity building and impact on research. Improved research design was the most common reported outcome and the most common role for patient partners was as members of the research team, and the most commonly used strategy to support involvement was by meetings.ConclusionThe evidence collected during this review advanced our understanding of the engagement of patients as research partners. As patient involvement becomes more mainstream, this knowledge will aid researchers and policy‐makers in the development of approaches and tools to support engagement.Patient/User InvolvementPatients led and conducted the grey literature search, including the synthesis and interpretation of the findings.     

Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international,multiple-stakeholder perspective

Purpose

Active patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance.

Methods

A modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored.

Results

Eighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance.

Conclusions

An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.

     

Preparing researchers for patient and public involvement in scientific research: Development of a hands‐on learning approach through action research

Background

Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5‐year coaching programme.

Objective

To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants.

Methods

A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation.

Findings

The programme comprised a kick‐off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor‐made feedback. The programme concluded with a combined meeting with all stakeholders.

Conclusion

Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.     

Patient‐initiated recruitment for clinical research: Evaluation of an outpatient letter research statement

Background

UK Hospital Trusts are charged with increasing patients’ research awareness and willingness to take part in research. This includes implementing strategies to encourage patient‐initiated enquiries about participation.

Objectives

To evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient‐initiated recruitment.

Setting

A medical outpatient clinic of a research‐active hospital trust, serving an inner‐city multi‐ethnic population across two boroughs.

Methods

Pre‐intervention and post‐intervention questionnaires were administered face‐to‐face to new patients. Questionnaires included closed questions and one open comments section. Data were analysed for frequencies, with thematic coding of open‐ended responses.

Results

The response rates were 87% for the pre‐intervention survey and 92% for the post‐intervention survey. In the post‐intervention survey, 85% of patients did not notice the research statement in the letter. More than half found the statement “a little unclear,” whilst one‐third considered it “clear.” Three‐quarters of respondents perceived the statement to be “a little helpful.” Only one person enquired about participating in clinical research having read the statement in the outpatient letter.

Conclusion

The analysis suggests that simple, single‐solution approaches such as including research statements in outpatient letters are unlikely to be sufficient to significantly facilitate patient‐initiated recruitment. Recruitment efforts need to take into consideration the diversity of patient constituencies including the reasons they seek health care, and how patients can meaningfully access information (research literacy).     

Patient partners’ perspectives of meaningful engagement in synthesis reviews: A patient‐oriented rapid review

BackgroundA growing literature describes promising practices for patient‐oriented research (POR) generally; however, those for systematic reviews are largely derived through the lens of a researcher. This rapid review sought to understand meaningful engagement in synthesis reviews from the patient partner (PP) perspective.DesignThe review team comprised PPs, librarians, SCPOR staff and academic faculty. We searched OVID MEDLINE and EMBASE, ProQuest Nursing and Allied Health, and core POR websites. Documents describing PP reflections on their involvement in synthesis reviews were included. Screening and data extraction were conducted by two independent reviewers. Thematic analysis was employed to identify themes in the data regarding PP perceptions of engagement in synthesis reviews.ResultsThe literature search yielded 1386 citations. Eight journal articles and one blog post were included. Seven studies focused on conducting systematic reviews on a particular health or patient‐related topic to which PP involvement was an important part and two studies focused specifically on the experience of including PP in synthesis reviews. PPs engaged in the review process through a variety of mechanisms, levels and stages of the review process. Three major themes emerged from the data: (1) foster partnerships through team development, (2) provide opportunities for outcomes valued by PP and (3) strengthen the research endeavour.ConclusionFostering partnerships through team development is foundational for meaningful engagement in synthesis reviews. It requires sensitively balancing of various needs (eg overburdening with contributions). Meaningful involvement in reviews has both personal and research benefits.Patient InvolvementPatient partners were equal collaborators in all aspects of the review.     

Governance mechanisms in the physician–patient relationship: a literature review and conceptual framework

Background

The physician–patient relationship is a critical component of the integrated approach to excellence in health‐care delivery. Although commonly modelled within the boundaries of the agency theory and regarded as synonymous to an agent–principal interaction, there exists only a sparse understanding about the most effective ways of governing it.

Objective

This article undertakes a selective review of the growing body of research on the governance of the physician–patient relationship to discuss the current state of the knowledge in the field and suggest promising avenues for further exploration.

Findings

On the basis of an extensive analysis of the relevant literature, we identify two emerging streams of inquiry on the trust‐based (i.e. trust and ethical oversight) and distrust‐based (i.e. patient information‐empowerment and decision‐making authority) governance mechanisms of the physician–patient relationship and discuss the key findings within each stream.

Discussion

To conciliate the on‐going scholarly debate concerning the efficacy of trust‐ and distrust‐based mechanisms, we draw the foundations of a conceptual framework which might serve as a guide for more integrative research endeavours on the governance of the physician–patient relationship.     

Developing a conceptual framework for patient safety culture in emergency department: A review of the literature

Patient safety culture is a critical component of modern health care. However, the high‐paced, unpredictable nature of the emergency department (ED) environment may impact adversely on it. The aim of this paper is to explore the concept of patient safety culture as it may apply to emergency health care, and to propose a conceptual framework that could form the basis for interventions designed to improve it. This is a systematic review of the literature. A search was undertaken of common electronic bibliographic databases using key words such as safety culture, safety climate, and Emergency Department. Articles were analysed for consistent themes with the aim to construct a conceptual framework. Ten articles met the inclusion criteria that specifically examined safety culture in the ED. Synthesis of the literature resulted in the emergence of three overarching themes of ED practice found to impact on safety culture in the ED. These were the dimensions of patient safety culture, the factors influencing it, and the interventions for improving it. A conceptual framework was constructed that identifies elements that significantly impact the patient safety culture in the ED. This framework may assist managers and researchers to take a comprehensive approach to build an effective safety culture in ED setting.     

Quality of care from the patients' perspective: from theoretical concept to a new measuring instrument

Introduction

Patient views on quality of care are of paramount importance with respect to the implementation of quality assurance (QA) and improvement (QI) programmes. However, the relevance of patient satisfaction studies is often questioned because of conceptual and methodological problems. Here, it is our belief that a different strategy is necessary.

Objective

To develop a conceptual framework for measuring quality of care seen through the patients' eyes, based on the existing literature on consumer satisfaction in health care and business research.

Results

Patient or consumer satisfaction is regarded as a multidimensional concept, based on a relationship between experiences and expectations. However, where most health care researchers tend to concentrate on the result, patient (dis)satisfaction, a more fruitful approach is to look at the basic components of the concept: expectations (or `needs') and experiences. A conceptual framework – based on the sequence performance, importance, impact – and quality judgements of different categories of patients derived from importance and performance scores of different health care aspects, is elaborated upon and illustrated with empirical evidence.

Conclusions

The new conceptual model, with quality of care indices derived from importance and performance scores, can serve as a framework for QA and QI programmes from the patients' perspective. For selecting quality of care aspects, a category-specific approach is recommended including the use of focus group discussions.

     

Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient,family and caregiver engagement in health systems

Introduction

Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit—the Engage with Impact Toolkit.

Methods

The measurement framework and toolkit were co-designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design.

Results

The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu-driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient-centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1–5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web-based toolkit ( www.evaluateengagement.ca ) hosts the measurement framework and related evaluation supports.

Conclusion

The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work.

Patient Contribution

Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end-users of the toolkit, their perspectives, knowledge and opinions were critical.     

Collaboration and co‐ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team

Background Different strategies by which patients can be involved in research include consultation, control and collaboration. This article focuses on collaboration within research teams and considers this with reference to a research project about setting a social–scientific agenda for health research from the perspectives of patients with a chronic kidney disease (CKD). Objective To examine the dynamics and dialogues in a collaboration between patient research partners and professional researchers. Design A responsive methodology was used in the research project. Two patient research partners participated in the research team. Twenty‐seven patients with CKD and parents of young children with CKD were interviewed, seven focus groups were organized and observations were held at a dialysis centre. Results During the collaboration, the research partners and professional researchers engaged in a mutual learning process in all stages of the project. The professional researchers gave the research partners a sense of ownership in the research process. The research partners could relate to the lives of patients by using their experiential knowledge. In the context of collaborative working, this helped shape an agenda for research. Conclusion and discussion The active involvement of patients as research partners can add value to a research strategy, especially when research partners and professional researchers engage in a dialogue that is open, inclusive and deliberative. Issues for discussion include the possibility of ‘over‐involvement’, the research profile and training of research partners and whether participation of patients is restricted to certain types of research.     

Involving people with a lived experience when developing a proposal for Health Technology Assessment research of nonsurgical treatments for pelvic organ prolapse: Process and reflections

Introduction

Patient and public involvement (PPI) is an expectation when conducting research, including Health Technology Assessment (HTA), but practical guidance for those wishing to embed PPI into the grant application process is not always easily accessible. We wanted to ensure that PPI was central when preparing a proposal for an investigator-led evidence synthesis HTA investigating nonsurgical interventions for pelvic organ prolapse (POP) in women. Here, we describe our methods.

Methods

We recruited two patient co-applicants separately through an open process to help ensure that patient voice was present within our proposal's management and direction. We invited co-applicants to attend research team meetings and comment on the full proposal. We designed, recruited to and facilitated a scoping workshop, as well as undertook its subsequent evaluation. The insight shared within the workshop for patients with a lived experience of POP, including our patient co-applicants, helped us develop the scope and rationale behind our HTA proposal. We particularly considered the interventions to include within the evidence synthesis. We also considered the outcome measures for both the evidence synthesis and economic evaluation. We elicited ideas about where and how results could be disseminated. Feedback suggested the workshop was as valuable for the attendees as it was for the researchers, making them feel valued and listened to. The time spent by researchers working on the activity was substantial and not directly funded but a necessary and valuable activity in developing our potential HTA. Our work was informed using the UK Standards for Public Involvement and the Authors and Consumers Together Impacting on eVidencE (ACTIVE) framework.

Conclusions

PPI can be enormously valuable in both developing and strengthening research proposals. However, further guidance is needed to help researchers recognise the level and type of involvement to use at this early stage, particularly given the large time investment needed to embed meaningful PPI.

Patient and Public Contribution

Women with a lived experience of POP were involved at every stage of the grant application process; their involvement is documented in full throughout this work.     

Barriers to and enablers of the promotion of patient and family participation in primary healthcare nursing in Brazil,Germany and Spain: A qualitative study

Background

Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self-management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses' efforts to support patients' participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting.

Objective

To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care.

Methods

We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germany and Spain. The data was analyzed using thematic coding.

Results

We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a ‘biomedical’ approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation.

Discussion and Conclusions

Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitioners and PHC planners. PHC nurses should be trained in communicative competence when discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task.

Patient or Public Contribution

This study is part of a research project associated with the research network ‘forges: User-oriented care: Promotion of health in the context of chronic diseases and care dependency’. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated.     

Patient and public involvement in health research from researchers' perspective

Background

Patient and public involvement (PPI) is increasingly considered an integral part of health research, and the focus has shifted from why we need PPI to how users can be involved in a meaningful way. The rationale for investigating experiences with PPI from the perspective of occupational therapy (OT)-trained researchers' originates in the interrelationship between the inclusive approach to knowledge production, and participation and inclusion as core tenets of OT. The aim of this study was to explore PPI in health research from the perspective of OT-trained researchers.

Method

Semi-structured individual interviews were conducted online with nine Norwegian researchers. The interviews were analysed using reflexive thematic analysis.

Results

Professional background and clinical experience from person-centred OT formed the foundation for how these researchers approached and facilitated PPI in their research. Valuing experiential knowledge and facilitating PPI to be meaningful for public collaborators were highlighted as essential for PPI to have an impact. The need to balance mutual expectations, requirements for research, and what might be possible to achieve within a research study were found to be vital.

Conclusion

Collaborative clinical experience constituted a sound foundation for implementing PPI in research. The occupational perspective underlines the importance of acknowledging experiential knowledge as essential to facilitating meaningful PPI. Challenges related to requirements for research and culture for implementing PPI were addressed by clarifying roles and expectations.

Patient or Public Contribution

Three public collaborators were involved in developing the aims, the interview guide, and the data analysis. They all had previous experience being involved in research.