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Original Research
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Patient and public involvement in healthcare: a systematic mapping review of systematic reviews – identification of current research and possible directions for future research
https://twitter.com/janerle2002
http://orcid.org/0000-0001-6651-9110
Bergholtz Jana 12jana.bergholtz@gu.se

https://twitter.com/Researchonthego
http://orcid.org/0000-0001-6111-8377
Wolf Axel 12axel.wolf@gu.se

Crine Vanessa 3vanessa.crine@umu.se

Cleeve Helena 4helena.cleeve@gu.se

https://twitter.com/MariaJ_Santana
http://orcid.org/0000-0002-0202-5952
Santana Maria-Jose 56mjsantan@ucalgary.ca

Björkman Ida 12ida.bjorkman@gu.se

1 Sahlgrenska Academy, University of Gothenburg Centre for Person-Centred Care, Gothenburg, Sweden
2 Sahlgrenska Academy, University of Gothenburg Institute of Health and Care Sciences, Gothenburg, Sweden
3 Department of Medical and Translational Biology, Umeå University, Umea, Sweden
4 University of Gothenburg Department of Sociology and Work Science, Gothenburg, Sweden
5 Cumming School of Medicine, University of Calgary Department of Community Health Sciences, Calgary, Alberta, Canada
6 Patient Engagement Team, Alberta Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit, Calgary, Alberta, Canada
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Abstract

Objectives

To provide an overview of patient and public involvement (PPI) in the mesolevel and macrolevel of healthcare (different from PPI in research) and identify directions for future research by mapping contexts, terminology, conceptual frameworks, measured outcomes and research gaps.

Design

Mapping review of systematic reviews. A patient coresearcher (JB) was involved in all stages. A broad search strategy was applied to capture the variation in terminology.

Data sources

MEDLINE, CINAHL and PsycINFO were searched from 1 January 2001 to 5 December 2022.

Eligibility criteria

We included systematic reviews of empirical studies focusing on PPI in the mesolevel and macrolevel of healthcare.

Data extraction and synthesis

Three independent reviewers used standardised methods to screen studies and extract data. Thematic categories were created inductively through iteration. The results were organised in narrative, visual or tabular formats.

Results

4419 identified records were screened. 37 systematic reviews were eligible for inclusion. Most studies were narrative syntheses (N=26). Identified context categories were PPI for healthcare quality improvement (22%), patient safety (8%), community-based initiatives (27%), peer support (16 %) and education of healthcare professionals (27%). A wide range of terms was used to discuss PPI, with community participation being the most common. 28 reviews reported on frameworks, conceptual guidance and/or policy documents. Nine different types of outcomes were identified. The research gap pointed out most frequently is the lack of studies of robust designs that allow for replication and long-term follow-up, followed by studies on cost-effectiveness and resources needed. There is a need for consensus on the use of terminology.

Conclusions

This mapping review sheds light on the evolving landscape of PPI in healthcare. To advance the field, future research should prioritise rigorous study designs, cost-effectiveness assessments and consensus-building efforts to create a more unified and impactful approach for PPI in healthcare.

Patient Participation
Health Services
Patient-Centered Care
MEDICAL EDUCATION & TRAINING
Quality in health care
Health & safety
http://dx.doi.org/10.13039/501100006756 Centrum fÖr Personcentrerad Vård 234336605 The views expressed in the submitted article are our own and do not represent those of our institutions.
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pmcSTRENGTHS AND LIMITATIONS OF THIS STUDY

This mapping review of systematic reviews provides a broad overview of research activity and employs a search strategy designed to capture the wide range of terminology used for patient and public involvement in healthcare.

A patient coresearcher (JB) was included as team member and coauthor of the study.

Mapping reviews, by design, do not allow for an in-depth description of the field, however, key data and findings are highlighted in tabular format.

Grey literature was excluded, language was restricted to English and a second search update could not be performed due to resource constraints, potentially limiting the scope of this mapping review.

We did not assess the quality of the 37 systematic reviews and did not check whether they included some of the same studies.

Background

Patient and public involvement (PPI) in healthcare has been broadly defined as ‘ways in which patients can draw on their experience and members of the public can apply their priorities to the evaluation, development, organisation and delivery of health services’.1 Several international and national policy documents support the principles of PPI in healthcare.2 3 An early example is the 1978 Declaration of Alma-Ata which stated the community is central to the development of healthcare services.4 In Europe, the implementation of person-centred care can be fostered with the standard EN 17398:2020 Patient involvement in healthcare—Minimum requirements for person-centred care.5 General arguments for PPI are based on democratic and ethical rights6 as well as patient empowerment.7

Despite the international interest in enabling healthcare systems to involve patients, family caregivers, communities and the public in decisions, major challenges for studying the impact and effects of PPI are inconsistent terminology, methods and reporting.8 9 Even though some of the core aspects may overlap, Modigh et al pointed out that it is important to distinguish between PPI in healthcare versus PPI in research in order to develop a more nuanced understanding.9 In their scoping review of reviews, they found many reviews reporting on the impact of patient involvement in individual care and very few reviews covering PPI at the mesolevel and macrolevel of healthcare.9 This is surprising, especially because this field has seen a great deal of activity in the past two decades.

Several studies also raise the lack of a theoretical basis for understanding how PPI induces improvement as a major problem for PPI in practice.10 11 There is a commonly expressed frustration in the field regarding the difficulty in describing how to do PPI, that is, without engaging in tokenism, so it will achieve meaningful results.11 12 While Greenhalgh et al provide a starting point for anyone who is new to PPI in research13—to our knowledge, such a collection of conceptual frameworks is lacking for PPI at the mesolevel and macrolevel of healthcare.

With our systematic mapping review of reviews, we aim to provide a broad overview of activities in the field of PPI at the mesolevel and macrolevel in healthcare while addressing the variation in terminology. While being attentive to the distinctions that can be drawn, we use ‘PPI’ to include patients, survivors, family members, informal caregivers, service users, community or charity representatives and citizens.

Purpose

The overarching goal of this mapping review is to provide an overview of PPI in the mesolevel and macrolevel of healthcare and identify possible directions for future research.

Our review addresses the following research questions:

In which contexts is PPI conducted?

What are the characteristics of participants involved in PPI?

Which conceptualisations (terms, frameworks) of PPI are used?

Which outcome measures are reported for PPI?

What findings and research gaps can be identified?

Method

Patient and public involvement

A patient coresearcher (JB) was involved in all stages of the review as the first author through a collaborative partnership-focused approach based on Boote et al’s principles of successful consumer involvement in research.13 14 Partnering with a patient coresearcher influenced the whole process from research questions being asked to writing the manuscript and disseminating findings.

Design

A mapping review aims to provide a broad overview of a research field, categorising existing literature to identify gaps from which further reviews and/or primary research can be commissioned.15 Mapping studies depict research activity and locations where it occurs, the flow of information and linkages.16

We performed a systematic mapping review of reviews; following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 reporting guidance17 as much as possible. The study protocol was preregistered on the Open Science Forum (https://osf.io/9b5j3).

The generally explored topics trace back to our research questions, which were defined in accordance with the PICo framework (Population or Problem, Interest and Context) for qualitative studies18 with:

Population: patients and public of all ages involved in PPI initiatives or interventions in healthcare, not restricted to any sociodemographic characteristic or geographical region.

Interest: the involvement of patients and the public in the mesolevel and macrolevel of healthcare.

Context: all healthcare contexts in which PPI is implemented, not restricted to any particular healthcare service type or a particular healthcare sector.

After research questions were defined, four major steps followed: searching, screening, data extraction and analysis/thematisation. No formal quality assessment was performed.15

Search and screening

A broad search strategy based on the PICo framework was used to capture the variation in the terminology used for PPI in publications (see online supplemental file 1 for search terms used for each part of PICo). Systematic electronic searches using a keyword search in the titles and abstracts were conducted by librarians of the Biomedical Library at Gothenburg University on 15 December 2021 and on 5 December 2022 within the following databases: MEDLINE via PubMed, CINAHL via EBSCO and PsycINFO via ProQUEST (see also online supplemental file 1). The search strategy was piloted against appropriate reviews to ensure that the relevant literature was identified. Search results were imported to the software Rayyan. The screening of abstracts and titles was performed independently by two reviewers (first search: JB and VC, updated search: JB and IB). Disagreements were resolved through discussion or by consulting an additional review author (AW).

Inclusion and exclusion criteria

Reviews were selected based on predefined eligibility criteria (see online supplemental file 1). Systematic reviews of empirical studies, which focused on the involvement of patients and the public at the mesolevel and macrolevel in healthcare, were eligible for inclusion when published in English in peer-reviewed journals. Searches were restricted to reviews published in English between 2001 and 2022 as a previous review on a similar topic19 searched the literature published until 2000. Other types of articles (eg, single studies, case reports, commentaries, editorials and review articles) and other types of reviews were excluded (eg, scoping, realist, rapid and umbrella) as well as systematic reviews published before 2001 or published in non-peer-reviewed journals. Systematic reviews including grey literature were excluded. Systematic reviews of studies not explicitly reporting on PPI in healthcare were excluded as well as reviews of studies on PPI in social care, due to the large differences between these domains of care. Reviews concerned with PPI in research, the engagement of participants as research subjects (eg, clinical trials) or in health technology assessment were also excluded, as these topics are more closely related to the field of medical and health research or health economics and have been extensively covered in previous reviews.

Data extraction and thematisation

A standardised data extraction form was used to extract data in Excel (online supplemental file 1). This form was predeveloped, pilot-tested on five randomly selected studies (by JB, VC and HC) and then adapted before the overall data extraction process started. Data were extracted by JB, VC and IB. We then systematically summarised extracted data related to our research questions and organised results in narrative, visual or tabular formats to provide the reader with a clear and structured overview.

More specifically, for research questions 1 (in which contexts is PPI conducted?) and 4 (which outcome measures are reported for PPI?), extracted data were organised in related themes. Preliminary themes for context and outcome categories were formed which were refined again and again as the extracted data were re-examined in an iterative process with continuing discussion between IB and JB. For outcomes, we included any proposed or eventuating positive or negative change short term or long term.

For research question 3 (which conceptualisations (terms, frameworks) of PPI are used?), in addition to data extraction, frameworks and guidance documents cited in the reviews were tracked down to the original publication and collected. To capture the broad terminology used in the reviews, the pdf file of each article was assessed via the search function to count which term(s) and/or combination of terms were used most often to describe and discuss PPI.

Results

Selection and characteristics of the included reviews

The PRISMA flow diagram17 in figure 1 presents the result of our search, detecting 5512 studies and 4419 after deduplication. After screening titles and abstracts, 108 articles were included for full-text review. 37 reviews were included as they met eligibility criteria. A list of excluded articles and reasons for exclusions can be found in online supplemental file 2.

Figure 1 PRISMA flow diagram. Reasons for exclusion: Reason 1: Systematic review searching/including grey literature, Reason 2: Other type of article or not a systematic review of empirical studies, for example, articles including reviews, more than 50% descriptive studies or case reports or policy documents. Reason 3: Focus on patient engagement/involvement solely in their individual healthcare decisions. Reason 4: Not explicitly reporting on the involvement of patients and the public in healthcare. Reason 5: No focus on patient/public involvement. Reason 6: About PPI in research. Reason 7: No demarcation between real patients and simulated patients/actors. PPI, patient and public involvement; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Most reviews were narrative syntheses (N=26),2045 followed by meta-analyses (N=6),4651 evidence reviews (N=3)5254 and thematic analyses (N=2).55 56 11 reviews were published before 2015 and the remaining 26 after indication of growing interest. 11 reviews had an explicit focus on low or middle-income countries.2024 30 3234 46 Two reviews focused on one country21 28 while the remaining 35 reviews included primary studies conducted in several countries.

A table with details of all 37 included systematic reviews can be found in online supplemental file 3. Only seven reviews were reported on PPI in the review process,36 38 46 49 50 53 54 see online supplemental file 4 for an assessment of the reviews using the GRIPP2 short-form reporting checklist.57

Contexts for PPI in healthcare

The search yielded 37 systematic reviews that can be broadly categorised into PPI for healthcare quality improvement (22%), for improved patient safety (8%), for community-based initiatives (27%), for peer support (16 %) and for education of healthcare professionals (27%) (see table 1).

Table 1 Context categories for PPI in healthcare

Healthcare quality improvement(N=8)	Patient safety(N=3)	Community-based initiatives (N=10)	Peer support (N=6)	Education of healthcare professionals (N=10)	
Bombard et al 201855Danhoundo et al 201820Evans et al 201021Green et al 202022Haldane et al 201923Kesale et al 202224Lloyd et al 202125Moore et al 201954	Giap and Park 202151Lee et al 202126Park and Giap 202027	Banna and Bersamin 201828Farnsworth et al 201453Haldane et al 202029Heintze et al 200730Hoon Chuah et al 201831Kerrigan et al 201346Moore et al 201432Prost et al 201347Rass et al 202056Sharma et al 201848	Gaiser et al 202152Genberg et al 201633Pitt et al 201350Satinsky et al 202134Simpson and House 200235Verma et al 202249	Dijk et al 202036Finch et al 201837Gordon et al 202038Happell et al 201439Jha et al 200940Lalani et al 201941Murray et al 202242Nguyen et al 202143Reinders et al 201144Scott et al 202045	
PPIpatient and public involvement

15 reviews did not focus on a diagnosis/health issue but on the quality of healthcare services in general, or education of healthcare professionals.2024 26 27 3645 51 Eight reviews reported on a mix of health issues/diagnoses/health risks.2123 25 28 32 32 5456 Four reviews focused solely on mental health or substance abuse.34 35 50 52 Three reviews focused on a specific infectious disease, namely HIV33 46 and dengue fever.30

Mental health and/or substance abuse was covered by 10 reviews,2225 29 34 35 50 52 5456 non-communicable diseases (excluding mental disorders) N=10,212325 28 29 49 54 infectious disease N=8,23 30 32 32 33 46 55 56 women and child health N=82532 47 48 5356 and healthy living N=6.21 23 28 31 54 55 See online supplemental file 5 for health issues covered by a number of reviews.

33 reviews reported primary studies from 73 different countries from all continents while 4 reviews did not report the country for the primary studies.27 37 39 53 Figure 2 shows a world map indicating the number of reviews reporting per country. Additional information can be found in online supplemental file 5 (the number of reviews reporting from each continent sorted by context categories).

Figure 2 World map produced in Excel showing the number of reviews reporting from each continent.

Characteristics of participants

In general, age, gender, ethnicity, educational levels or socioeconomic factors were not reported on an aggregated level. However, some reviews focused on specific population characteristics including sex workers,32 46 women in rural low-resource settings47 and people affected by armed conflict.56

Conceptualisations of PPI in healthcare

Terminology

Online supplemental file 6 shows the wide range of terms used in the 37 systematic reviews to discuss PPI. Notably, combinations of terms are used indicating who is being involved (eg, patient, user, service user, health service user, consumer, patient and family, patient and public, citizen, public, community) and how they are being involved (eg, feedback, participation, engagement, involvement, empowerment, mobilisation). In some cases, the word interventions are added (eg, patient feedback interventions, community empowerment interventions). The most common combination of terms in the included reviews is community participation occurring in the context of both, community-based initiatives and healthcare quality improvement.

Some authors decided to avoid the complications arising from using terms with similar meaning and used instead a more general framing such as ‘participatory approaches’,21 ‘participatory methods’54 or ‘participatory learning and action’.47

Frameworks, conceptual guidance and policy documents for PPI

A majority of the reviews (n=28) reported on frameworks, conceptual guidance and/or policy documents for PPI.202224 13 systematic reviews applied PPI frameworks to analyse, present and/or discuss their results.222527 31 32 36 38 42 51 53 Table 2 provides an overview of all frameworks, conceptual guidance and policy documents cited in the five context categories for PPI.

Table 2 Frameworks, conceptual guidance and policy documents for PPI in healthcare

Healthcare quality improvement	Patient safety	Community-based initiatives	Peer support	Education of healthcare professionals	
Accra Agenda for Action 200874 cited by Danhoundo et al 201820Alma Ata, WHO 19784cited by Kesale et al 202224Arnstein’s ladder of citizen participation62cited by Bombard et al 201855Bate and Robert’s framework75 discussed by Bombard et al 201855Carman’s framework76discussed by Bombard et al 201855CeHRes Roadmap77discussed by Moore et al 201954Decentralisation78cited by Kesale et al 202224Experience-based co-design (EBCD) toolkit22discussed by Green et al 202022IAP2 Spectrum63discussed by Lloyd et al 202125Community Engagement, NICE Guidance79cited by Evans et al 201021Paris Declaration 200574cited by Danhoundo et al 201820Social accountability80cited by Danhoundo et al 201820	Carman’s framework76discussed by Giap and Park 202151 and Park and Giap 202027Canadian guide for engaging patients in patient safety81discussed by Park and Giap 202027Higgins et al 201782cited by Giap and Park 202151 and Park and Giap 202027Longtin et al 201083cited by Park and Giap 202027 and Lee et al 202126NHS Framework for Patient Engagement in Patient Safety84discussed by Lee et al 202126WHO Framework on Patient and Family Engagement85cited by Park and Giap 202027 and Lee et al 202126	Arnstein’s ladder of citizen participation62cited by Haldane et al 202029 and Hoon Chuah et al 201831Ashodaya’s model86discussed by Moore et al 201432Community Engagement Continuum64discussed by Farnsworth et al 201453Integrated Model of Communication for Social Change (IMCSC) framework87discussed by Farnsworth et al 201453Popay’s framework65 cited by Haldane et al 202029 and discussed by Hoon Chuah et al 201831Rosato et al 200888cited by Prost et al 201347Stone 199289cited by Sharma et al 201848Wallerstein 199290 cited by Kerrigan et al 201346, Prost et al 201347 and Moore et al 201432WHO’s wheel of participation66cited by Hoon Chuah et al 201831 and Haldane et al 202029	Caro and Fischer 201091cited by Verma et al 202249Dennis 200392cited by Satinsky et al 202134National Service Framework for Mental Health (UK)93cited by Simpson and House 200235Recovery Support Tools and Resources, Guidance by Substance Abuse and Mental Health Services Administration (USA)69cited by Gaiser et al 202152 and Satinsky et al 202134Simoni et al 201194cited by Genberg et al 201633Voices in partnership: involving users and carers in commissioning and delivering mental health services95cited by Simpson and House 200235	Arnstein’s ladder of citizen participation62cited by Gordon et al 202038Cambridge Framework by Spencer et al 200096described by Gordon et al 202038Lathlean et al 200697cited by Happell et al 201439Patient and public involvement in undergraduate medical education, General Medical Council98cited by Dijk et al 202036Rowland et al 201999cited by Murray et al 202242Tew et al 200467cited by Gordon et al 202038Towle et al 201068 discussed by Dijk et al 202036 and Gordon et al 202038, cited by Nguyen et al 202143Tritter’s framework1cited by Lalani et al 201941	
PPIpatient and public involvement

Outcome measures for PPI in healthcare

We classified the reviews according to nine different types of outcomes; community outcomes, costs, discrete products, governance outcomes, health correlates, health outcomes, participants’ perceptions and knowledge, service outcomes, service providers’ perceptions and knowledge (see table 3).

Table 3 Outcomes reported in reviews

Outcome	Reviews reporting	
Community outcomes	Danhoundo et al 2018,20 Farnsworth et al 2014,53 Haldane et al 2019,23 Hoon Chuah et al 2018,31 Moore et al 2014,32 Rass et al 202056	
Costs	Farnsworth et al 2014,53 Green et al 2020,22 Prost et al 201347	
Discrete products	Bombard et al 2018,55 Danhoundo et al 2018,20 Lloyd et al 2021,25 Moore et al 2019,54 Murray et al 202242	
Governance outcomes	Bombard et al 2018,55 Danhoundo et al 2018,20 Haldane et al 2019,23 Kesale et al 2022,24 Lloyd et al 202125	
Health correlate outcomes	Danhoundo et al 2018,20 Pitt et al 2013,50 Simpson and House 200235	
Health outcomes	Banna and Bersamin 2018,28 Danhoundo et al 2018,20 Evans et al 2010,21 Farnsworth et al 2014,53 Gaiser et al 2021,52 Genberg et al 2016,33 Giap and Park 2021,51 Haldane et al 2019,23 Heintze et al 2007,30 Hoon Chuah et al 2018,31 Kerrigan et al 2013,46 Lee et al 2021,26 Moore et al 2014,32 Park and Giap 2020,27 Pitt et al 2013,50 Prost et al 2013,47 Satinsky et al 2021,34 Sharma et al 2018,48 Verma et al 202249	
Participants perceptions and knowledge	Banna and Bersamin 2018,28 Danhoundo et al 2018,20 Evans et al 2010,21 Giap and Park 2021,27 Green et al 2020,22 Haldane et al 2019,23 Haldane et al 2020,29 Happell et al 2014,39 Jha et al 2009,40 Lee et al 2021,26 Nguyen et al 2021,43 Park and Giap 2020,27 Pitt et al 201350	
Service outcomes	Bombard et al 2018,55 Danhoundo et al 2018,20 Farnsworth et al 2014,53 Giap and Park 2021,51 Green et al 2020,22 Haldane et al 2020,29 Hoon Chuah et al 2018,31 Lalani et al 2019,41 Lee et al 2021,26 Lloyd et al 2021,25 Park and Giap 2020,27 Pitt et al 2013,50 Rass et al 2020,56 Sharma et al 201848	
Service providers perceptions and knowledge	Danhoundo et al 2018,20 Dijk et al 2020,36 Evans et al 2010,21 Finch et al 2018,37 Gordon et al 2020,38 Haldane et al 2019,23 Haldane et al 2020,29 Happell et al 2014,39 Jha et al 2009,40 Lalani et al 2019,41 Nguyen et al 2021,43 Park and Giap 2020,27 Reinders et al 2011,44 Scott et al 202045	

Community outcomes included attitudes, acceptability or empowerment of communities and intervention coverage. Costs included comparisons of methods for PPI and cost-effectiveness. Discrete products were educational packages, tools, policy documents, competency frameworks and eHealth resources. Examples of health outcomes include changes in the physical and mental health status of the individual as well as health-related behaviours. Examples of this category are body mass index (BMI), quality of life, hospital admission, incidence of infectious disease and adherence to treatment. Health correlates include infrastructure and sanitation ratings as well as employment. Examples of governance outcomes include organisational culture change and patient representation on boards or community priority settings. Participants’ perceptions and knowledge include those of service users, patients and their families as well as others involved in PPI such as peers. Examples of service outcomes include access, availability, use, quality, development of new services and care pathways, adverse events, length of hospital stay and work environment. Service providers’ perceptions and knowledge also include those of students.

Findings and identified research gaps

In the category of community-based initiatives, there was one meta-analysis showing that PPI was non-significantly associated with a reduction of maternal and neonatal mortality.47 In the area of patient safety one meta-analysis showed that PPI significantly reduced adverse events, decreased the length of stay, increased patient safety experiences and improved patient satisfaction.51 For peer support one meta-analysis found that there were statistically significant changes in haemoglobin A1c after the interventions. However, there were no significant changes in low-density lipoprotein, BMI, systolic blood pressure and health-related quality of life).49 No meta-analysis was identified in the category of education of healthcare professionals but findings show that patients were engaged in various educational settings within and outside the hospital36 mainly in the role of teacher36 and more seldom as formative assessor36 40 or in curriculum development.40 PPI improved students’ clinical and communication skills,37 38 facilitated holistic and humanistic qualities and a better understanding of person-centred care.38 44 No meta-analysis was found in the category healthcare quality improvement but findings show that the level of engagement appears to influence the outcomes.55 Evans et al report that very little evidence exists of participatory approaches having any noteworthy impact on health or social outcomes21 while another review reports positive outcomes on organisational, community and individual level.23

The research gap pointed out most frequently is the lack of studies of robust designs that allow for replication and long-term follow-up,2021 23 25 26 29 3136 40 43 50 52 followed by studies on cost-effectiveness and resources needed.23 25 29 30 38 40 47 52 Other research gaps identified are the need for conceptual, terminology and guideline consensus within the field.22 27 36 51 54 55 Two reviews point out certain target groups missing from the available literature, being indigenous youth28 and males48 while two reviews wish for more qualitative data on how patients themselves experience the involvement process or how they are meaningfully engaged.44 55

Discussion

The findings of this mapping review of systematic reviews provide valuable insights into the state of PPI in the mesolevel and macrolevel of healthcare. The results indicate that most systematic reviews in this area are narrative syntheses, followed by meta-analyses, evidence reviews and thematic analyses. This suggests that while there is a growing interest in PPI, the evidence base is diverse, which challenges when trying to draw comprehensive conclusions.

A notable shift in the publication of systematic reviews can be seen, with a growing interest in PPI in healthcare after 2015. This trend reflects the increasing recognition of the importance of involving patients and the public in healthcare decision-making processes.2 10 58 Several areas for PPI were identified showing that it is not limited to a single context; rather, it is employed across healthcare quality improvement, patient safety, community-based initiatives, peer support and education of healthcare professionals. This diversity underscores the adaptability and relevance of PPI in addressing various healthcare challenges.

The review also highlights the global reach of PPI, with primary studies included from 73 different countries across all continents. This international scope reflects the universal applicability and importance of involving patients and the public in healthcare decision-making. PPI in healthcare quality improvement, patient safety and the education of healthcare professionals mostly occurs in high-income countries. Community-based initiatives are mainly conducted in low-income/middle-income countries and primarily concern infectious disease control and women/child health. Peer support, on the other hand, appears to occur predominantly in mental health/substance abuse in North America and Europe.

The data reveal a wide range of terms used to describe and discuss PPI at the mesolevel and macrolevel of healthcare. This diversity in terminology can be both enriching and challenging, as it reflects the evolving nature of the field.10 58 The variation in terms used to describe PPI activities and interventions in healthcare confirms previous findings and underlines current discussions of a ‘conceptual muddle’ that might hamper the implementation of PPI.555961 Thus, standardising the language could enhance clarity and communication in this area.

Many systematic reviews reported on frameworks, conceptual guidance and policy documents for PPI. This indicates that researchers and practitioners are drawing on established frameworks to guide their PPI efforts, which can contribute to consistency and best practices. Several systematic reviews refer to Arnstein’s ladder of citizen participation62 and some of the frameworks that are being applied for PPI in healthcare quality improvement, community-based initiatives and the education of healthcare professionals have clearly evolved from Arnstein’s ladder: the IAP2 spectrum,63 the Community Engagement Continuum,64 Popay’s model,65 WHO’s wheel of participation66 and Tew’s ladder.67 Most advancements and more detailed discussions of conceptual frameworks can be observed in systematic reviews for PPI in the education of healthcare professionals, where, for example, Gordon et al38 suggested an amendment to the use of Towle’s framework68 and Dijk et al36 defined new roles that could not be ascribed to a specific level in Towle et al’s framework.68 Roles for patient representatives are thus well defined in education.36 38 68 In peer support,52 69 roles are naturally more specific, but in healthcare quality improvement and community-based initiatives, roles could be better defined, see, for example, Bombard et al55 and Haldane et al.29 Only three systematic reviews identified theories and frameworks used in each included study.31 53 54 Hoon Chuah et al31 found that most single studies were undertheorised. Furthermore, Rass et al56 point out that there is limited critical engagement with concepts of participation in the context of crisis management.

Nine types of outcomes of PPI were identified, ranging from community outcomes to service providers’ perceptions and knowledge. This comprehensive approach to assessing the impact of PPI reflects the multifaceted nature of its influence on healthcare but this inconsistency in reporting makes it difficult to compare study results and perform meta-analyses. As for all complex interventions, outcomes must be carefully chosen in the light of the interventions purpose. To be able to choose the right outcomes, there must be an understanding and/or theory of the causal chains for why one can expect an intervention to lead to a specific outcome.70 Outcomes chosen assessing the impact and effectiveness of PPI also varies in relation to why one wishes to engage in such practices. Thus, what one person considers a successful involvement may differ from another’s perspective. For example, PPI is a highly valued democratic right building on the idea that those who are governed are supposed to have influence on the governance.62 From such a perspective, outcome for PPI chosen is empowerment of participants, partnership and mutual learning among stakeholders, local capacity building, long-term commitment and actual change of implementation sites.71 If involvement is a right it can be argued that it is worth doing regardless of impact but, as Staley 2015 argues in the case of PPI in research, we still need to ask what difference it makes and which is the best way to do it.72

To measure the effects and impact of PPI, it is also crucial to consider the complex–interplay of various factors leading to a certain outcome.11 As already pointed out in the Alma Ata declaration, every community might have specific local challenges and needs, meaning there is no one-size-fits-all for PPI. Again, the findings from specific categories of PPI contexts underscore the heterogeneity of results. While some areas, such as patient safety, show significant positive outcomes, others require more robust evidence.

The predominant research gap for future research in this field is the scarcity of robustly designed studies that are replicable and incorporate long-term follow-up. This concern has been highlighted across a broad range of literature sources. One crucial aspect is to define and describe the components of PPI in the study design, as the lack of consensus on concepts, terminology and guidelines within this field, underscores a critical need for standardisation and clarity. Using the European standard (EN 17398:2020) could be one step in defining and describing the components needed for minimum requirements of patient involvement in mesolevel and macrolevel healthcare.5 Additionally, there is a notable need for research focusing on the cost-effectiveness and resource allocation in this domain, as indicated by various studies. The existing literature seems to inadequately address the aspects of equality and equity in PPI, especially neglecting specific demographic groups such as indigenous youth and males. This oversight signals a pressing requirement for research that is more inclusive and representative of diverse populations. Lastly, there is a call for increased qualitative research that delves into patients’ personal experiences with involvement processes and how they perceive their engagement as meaningful, and its connection to person-centredness. This comprehensive approach to identifying research gaps is essential for advancing the field in a balanced and inclusive manner.

Our mapping review of systematic reviews complements recently published studies in several ways. Usher and Denis explored storylines in the PPI literature in a meta-narrative review to better understand persistent difficulties in the transformation of healthcare systems.10 They concluded that developments across microlevel, mesolevel and macrolevel need to be captured to see how they support one another to drive, enable and sustain change. The systematic review of reviews by Ocloo et al explored theory, barriers and enablers for PPI across health, social care and patient safety73 and found that the development of theory-driven approaches is a neglected area. Greenhalgh et al reported on frameworks for PPI in research,13 whereas we cover frameworks and conceptual guidance for PPI in the mesolevel and macrolevel of healthcare (see table 2) which can be helpful for those who are new to engaging patients and the public.

Strengths and limitations

This study benefited from the inclusion of a patient coresearcher (JB) as a team member and author, providing a patient perspective throughout the whole process. We employed a comprehensive search strategy, allowing for a wide exploration of the terminology used in publications related to PPI in healthcare. A rigorous screening process was conducted, and the careful selection process enhanced the reliability and relevance of the included reviews. A limitation is that the language was restricted to English, which may introduce language bias where relevant research published in other languages may have been excluded, potentially limiting the scope of the mapping review. Also, grey literature was excluded, and such can sometimes contain valuable insights not found in peer-reviewed journals, and its exclusion may lead to the omission of relevant information. The study protocol was registered on the Open Science Forum, providing transparency about the research process and facilitating reproducibility. The method for systematic mapping review was chosen as this is useful for identifying patterns in a very large body of literature. Mapping reviews, by design, do not typically include quality assessment or statistical analyses of the included reviews.15 While this approach provides a broad overview of research activity, it does not evaluate the methodological quality or rigour of the reviews themselves and does not allow for an in-depth description of the field. However, a strength of our mapping review is that key data and findings are displayed in tabular format.

We did not check whether reviews included the same references. Some reviews studied similar topics and may therefore have included some of the same studies.

Conclusion

In conclusion, this systematic mapping review sheds light on the evolving landscape of PPI in the mesolevel and macrolevel of healthcare. The diversity in systematic review types, contexts and terminology highlights the complexity of the field. While there is evidence of positive outcomes in certain areas, several research gaps remain to be addressed. To advance the field of PPI, future research should prioritise rigorous study designs, cost-effectiveness assessments and consensus-building efforts to create a more unified and impactful approach to involving patients and the public in healthcare decision-making. Overall, this underscores the importance of continued exploration and development of PPI practices in the mesolevel and macrolevel of healthcare to enhance the relevance, quality, safety and effectiveness of healthcare services worldwide.

supplementary material

10.1136/bmjopen-2023-083215 online supplemental file 1

10.1136/bmjopen-2023-083215 online supplemental file 2

10.1136/bmjopen-2023-083215 online supplemental file 3

10.1136/bmjopen-2023-083215 online supplemental file 4

10.1136/bmjopen-2023-083215 online supplemental file 5

10.1136/bmjopen-2023-083215 online supplemental file 6

Acknowledgements

Preliminary results of this work were presented at the 23rd International Conference for Integrated Care in Antwerp, in May 2023 (https://www.youtube.com/watch?v=m63dujK9zus). We would like to thank Linda Hammarbäck and Helen Sjöblom from the Gothenburg University Library (Biomedical Library) for assistance with the search strategy and performing the search. Furthermore, we would like to thank Eskil Degsell from GPCC’s person council for fruitful discussions.

Data availability statement

Data are available on reasonable request. All data relevant to the study are included in the article or uploaded as online supplemental information.

Review Process File
19 09 2024

Funding: This work was funded by Göteborgs Universitet, Centrum för Personcentrerad Vård (GPCC), Sweden. Grant number: 234336605.

prepub: Prepublication history and additional supplemental material for this paper are available online. To view these files, please visit the journal online (https://doi.org/10.1136/bmjopen-2023-083215).

Provenance and peer review: Not commissioned; externally peer reviewed.

Patient consent for publication: Not applicable.

Map disclaimer: The inclusion of any map (including the depiction of any boundaries therein), or of any geographic or locational reference, does not imply the expression of any opinion whatsoever on the part of BMJ concerning the legal status of any country, territory, jurisdiction or area or of its authorities. Any such expression remains solely that of the relevant source and is not endorsed by BMJ. Maps are provided without any warranty of any kind, either express or implied.

Patient and public involvement: Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
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References

1 Tritter JQ Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world Health Expect 2009 12 275 87 10.1111/j.1369-7625.2009.00564.x 19754691
2 World Health Organization WHO global strategy on people-centred and integrated health services: interim report 2015 48 Available https://www.afro.who.int/sites/default/files/2017-07/who-global-strategy-on-pcihs-main-document_final.pdf
3 House of Commons, Health Committee Patient and public involvement in the NHS 2007 Available https://publications.parliament.uk/pa/cm200607/cmselect/cmhealth/278/278i.pdf
4 WHO Declaration of Alma-Ata International Conference on Primary Health Care, Alma-Ata, USSR, 6–12 September 1978 1978
5 Svenska Institutet för Standarder, SIS Standard - patient involvement in health care - minimum requirements for person-centred care ss-en 17398:2020 2023 Available https://www.sis.se/en/produkter/health-care-technology/general/health-care-services-in-general/ss-en-173982020/
6 Solomon MZ Gusmano MK Maschke KJ The Ethical Imperative And Moral Challenges Of Engaging Patients And The Public With Evidence Health Aff (Millwood) 2016 35 583 9 10.1377/hlthaff.2015.1392 27044955
7 Ocloo J Matthews R From tokenism to empowerment: progressing patient and public involvement in healthcare improvement BMJ Qual Saf 2016 25 626 32 10.1136/bmjqs-2015-004839
8 O’Mara-Eves A Brunton G McDaid D et al Community Engagement to Reduce Inequalities in Health: A Systematic Review, Meta-Analysis and Economic Analysis (Public Health Research) Southampton (UK) NIHR Journals Library 2013 Available http://www.ncbi.nlm.nih.gov/books/NBK262817/
9 Modigh A Sampaio F Moberg L et al The impact of patient and public involvement in health research versus healthcare: A scoping review of reviews Health Policy 2021 125 1208 21 10.1016/j.healthpol.2021.07.008 34376328
10 Usher S Denis JL Exploring expectations and assumptions in the public and patient engagement literature: A meta-narrative review Pat Educ Couns 2022 105 2683 92 10.1016/j.pec.2022.04.001
11 Matthews R Kaur M French C et al How helpful are Patient and Public Involvement strategic documents - Results of a framework analysis using 4Pi National Involvement Standards Res Involv Engagem 2019 5 31 10.1186/s40900-019-0164-0 31700675
12 Majid U The Dimensions of Tokenism in Patient and Family Engagement: A Concept Analysis of the Literature J Patient Exp 2020 7 1610 20 10.1177/2374373520925268 33457621
13 Greenhalgh T Hinton L Finlay T et al Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot Health Expect 2019 22 785 801 10.1111/hex.12888 31012259
14 Boote J Barber R Cooper C Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis Health Policy 2006 75 280 97 10.1016/j.healthpol.2005.03.012 15899535
15 Grant MJ Booth A A typology of reviews: an analysis of 14 review types and associated methodologies Health Info Libraries J 2009 26 91 108 10.1111/j.1471-1842.2009.00848.x
16 Cooper ID What is a “mapping study?” J Med Libr Assoc 2016 104 76 8 10.3163/1536-5050.104.1.013 26807058
17 Page MJ McKenzie JE Bossuyt PM et al The PRISMA 2020 statement: an updated guideline for reporting systematic reviews BMJ 2021 372 n71 10.1136/bmj.n71 33782057
18 Lockwood C Munn Z Porritt K Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation JBI Evid Implement 2015 13 179 10.1097/XEB.0000000000000062
19 Crawford MJ Rutter D Manley C et al Systematic review of involving patients in the planning and development of health care BMJ 2002 325 1263 10.1136/bmj.325.7375.1263 12458240
20 Danhoundo G Nasiri K Wiktorowicz ME Improving social accountability processes in the health sector in sub-Saharan Africa: a systematic review BMC Public Health 2018 18 497 10.1186/s12889-018-5407-8 29653531
21 Evans D Pilkington P McEachran M Rhetoric or reality? A systematic review of the impact of participatory approaches by UK public health units on health and social outcomes J Public Health (Oxf) 2010 32 418 26 10.1093/pubmed/fdq014 20194176
22 Green T Bonner A Teleni L et al Use and reporting of experience-based codesign studies in the healthcare setting: a systematic review BMJ Qual Saf 2020 29 64 76 10.1136/bmjqs-2019-009570
23 Haldane V Chuah FLH Srivastava A et al Community participation in health services development, implementation, and evaluation: A systematic review of empowerment, health, community, and process outcomes PLoS ONE 2019 14 e0216112 10.1371/journal.pone.0216112 31075120
24 Kesale AM Mahonge C Muhanga M Effects of decentralization on the functionality of health facility governing committees in lower and middle-income countries: a systematic literature review Glob Health Action 2022 15 2074662 10.1080/16549716.2022.2074662 35960165
25 Lloyd N Kenny A Hyett N Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review BMC Health Serv Res 2021 21 364 10.1186/s12913-021-06319-1 33879149
26 Lee M Lee NJ Seo HJ et al Interventions to Engage Patients and Families in Patient Safety: A Systematic Review West J Nurs Res 2021 43 972 83 10.1177/0193945920980770 33353509
27 Park M Giap T-T-T Patient and family engagement as a potential approach for improving patient safety: A systematic review J Adv Nurs 2020 76 62 80 10.1111/jan.14227 31588602
28 Banna J Bersamin A Community involvement in design, implementation and evaluation of nutrition interventions to reduce chronic diseases in indigenous populations in the U.S.: a systematic review Int J Equity Health 2018 17 116 10.1186/s12939-018-0829-6 30103753
29 Haldane V Singh SR Srivastava A et al Community involvement in the development and implementation of chronic condition programmes across the continuum of care in high- and upper-middle income countries: A systematic review Health Policy 2020 124 419 37 10.1016/j.healthpol.2019.11.012 31837832
30 Heintze C Velasco Garrido M Kroeger A What do community-based dengue control programmes achieve? A systematic review of published evaluations Trans R Soc Trop Med Hyg 2007 101 317 25 10.1016/j.trstmh.2006.08.007 17084427
31 Hoon Chuah FL Srivastava A Singh SR et al Community participation in general health initiatives in high and upper-middle income countries: A systematic review exploring the nature of participation, use of theories, contextual drivers and power relations in community participation Soc Sci Med 2018 213 106 22 10.1016/j.socscimed.2018.07.019 30075416
32 Moore L Chersich MF Steen R et al Community empowerment and involvement of female sex workers in targeted sexual and reproductive health interventions in Africa: a systematic review Global Health 2014 10 47 10.1186/1744-8603-10-47 24916108
33 Genberg BL Shangani S Sabatino K et al Improving Engagement in the HIV Care Cascade: A Systematic Review of Interventions Involving People Living with HIV/AIDS as Peers AIDS Behav 2016 20 2452 63 10.1007/s10461-016-1307-z 26837630
34 Satinsky EN Kleinman MB Tralka HM et al Peer-delivered services for substance use in low- and middle-income countries: A systematic review Int J Drug Policy 2021 95 103252 10.1016/j.drugpo.2021.103252 33892281
35 Simpson EL House AO Involving users in the delivery and evaluation of mental health services: systematic review BMJ 2002 325 1265 10.1136/bmj.325.7375.1265 12458241
36 Dijk SW Duijzer EJ Wienold M Role of active patient involvement in undergraduate medical education: a systematic review BMJ Open 2020 10 e037217 10.1136/bmjopen-2020-037217
37 Finch E Lethlean J Rose T et al How does feedback from patients impact upon healthcare student clinical skill development and learning? A systematic review Med Teach 2018 40 244 52 10.1080/0142159X.2017.1401218 29172899
38 Gordon M Gupta S Thornton D et al Patient/service user involvement in medical education: A best evidence medical education (BEME) systematic review: BEME Guide No. 58 Med Teach 2020 42 4 16 10.1080/0142159X.2019.1652731 31518544
39 Happell B Byrne L McAllister M et al Consumer involvement in the tertiary-level education of mental health professionals: a systematic review Int J Ment Health Nurs 2014 23 3 16 10.1111/inm.12021 23586597
40 Jha V Quinton ND Bekker HL et al Strategies and interventions for the involvement of real patients in medical education: a systematic review Med Educ 2009 43 10 20 10.1111/j.1365-2923.2008.03244.x 19140994
41 Lalani M Baines R Bryce M et al Patient and public involvement in medical performance processes: A systematic review Health Expect 2019 22 149 61 10.1111/hex.12852 30548359
42 Murray N Palermo C Batt A et al Does patient and public involvement influence the development of competency frameworks for the health professions? A systematic review Front Med (Lausanne) 2022 9 918915 10.3389/fmed.2022.918915 35957861
43 Nguyen W O’Reilly CL Moles RJ et al A systematic review of patient interactions with student pharmacists in educational settings J Am Pharm Assoc (2003) 2021 61 678 93 10.1016/j.japh.2021.08.014 34483057
44 Reinders ME Ryan BL Blankenstein AH et al The effect of patient feedback on physicians’ consultation skills: a systematic review Acad Med 2011 86 1426 36 10.1097/ACM.0b013e3182312162 21952067
45 Scott MD McQueen S Richardson L Teaching Health Advocacy: A Systematic Review of Educational Interventions for Postgraduate Medical Trainees Acad Med 2020 95 644 56 10.1097/ACM.0000000000003063 31702691
46 Kerrigan DL Fonner VA Stromdahl S et al Community empowerment among female sex workers is an effective HIV prevention intervention: a systematic review of the peer-reviewed evidence from low- and middle-income countries AIDS Behav 2013 17 1926 40 10.1007/s10461-013-0458-4 23539185
47 Prost A Colbourn T Seward N et al Women’s groups practising participatory learning and action to improve maternal and newborn health in low-resource settings: a systematic review and meta-analysis Lancet 2013 381 1736 46 10.1016/S0140-6736(13)60685-6 23683640
48 Sharma BB Jones L Loxton DJ et al Systematic review of community participation interventions to improve maternal health outcomes in rural South Asia BMC Pregnancy Childbirth 2018 18 327 10.1186/s12884-018-1964-1 30097022
49 Verma I Gopaldasani V Jain V et al The impact of peer coach-led type 2 diabetes mellitus interventions on glycaemic control and self-management outcomes: A systematic review and meta-analysis Prim Care Diabetes 2022 16 719 35 10.1016/j.pcd.2022.10.007 36307372
50 Pitt V Lowe D Hill S et al Consumer-providers of care for adult clients of statutory mental health services Cochrane Database Syst Rev 2013 2013 CD004807 10.1002/14651858.CD004807.pub2 23543537
51 Giap T-T-T Park M Implementing Patient and Family Involvement Interventions for Promoting Patient Safety: A Systematic Review and Meta-Analysis J Patient Saf 2021 17 131 40 10.1097/PTS.0000000000000714 33208637
52 Gaiser MG Buche JL Wayment CC et al A Systematic Review of the Roles and Contributions of Peer Providers in the Behavioral Health Workforce Am J Prev Med 2021 61 e203 10 10.1016/j.amepre.2021.03.025 34175172
53 Farnsworth SK Böse K Fajobi O et al Community Engagement to Enhance Child Survival and Early Development in Low- and Middle-Income Countries: An Evidence Review J Health Commun 2014 19 67 88 10.1080/10810730.2014.941519
54 Moore G Wilding H Gray K et al Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review J Participat Med 2019 11 e11474 10.2196/11474
55 Bombard Y Baker GR Orlando E et al Engaging patients to improve quality of care: a systematic review Implement Sci 2018 13 98 10.1186/s13012-018-0784-z 30045735
56 Rass E Lokot M Brown FL et al Participation by conflict-affected and forcibly displaced communities in humanitarian healthcare responses: A systematic review J Migr Health 2020 1–2 100026 10.1016/j.jmh.2020.100026
57 Staniszewska S Brett J Simera I et al GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research BMJ 2017 358 j3453 10.1136/bmj.j3453 28768629
58 Masterson D Areskoug Josefsson K Robert G et al Mapping definitions of co-production and co-design in health and social care: A systematic scoping review providing lessons for the future Health Expect 2022 25 902 13 10.1111/hex.13470 35322510
59 Hickmann E Richter P Schlieter H All together now - patient engagement, patient empowerment, and associated terms in personal healthcare BMC Health Serv Res 2022 22 1116 10.1186/s12913-022-08501-5 36056354
60 Forbat L Hubbard G Kearney N Patient and public involvement: models and muddles J Clin Nurs 2009 18 2547 54 10.1111/j.1365-2702.2008.02519.x 19207798
61 Messiha K Chinapaw MJM Ket HCFF et al Systematic Review of Contemporary Theories Used for Co-creation, Co-design and Co-production in Public Health J Public Health (Oxf) 2023 45 723 37 10.1093/pubmed/fdad046 37147918
62 Arnstein SR A Ladder Of Citizen Participation J Am Inst Plann 1969 35 216 24 10.1080/01944366908977225
63 IAP2 Australasia IAP2 public participation spectrum Available https://iap2.org.au/resources/spectrum/ Accessed 24-Oct-2023
64 Agency for Toxic Substances and Disease Registry (ATSDR) Clinical and Translational Science Awards Consortium Principles of community engagement 2022 Available https://www.atsdr.cdc.gov/communityengagement/ Accessed 24-Oct-2023
65 Popay J Community engagement for health improvement: questions of definition, outcomes and evaluation. a background paper prepared for NICE National Institute for Clinical Excellence 2006
66 World Health Organization Regional Office for Europe Community participation in local health and sustainable development: approaches and techniques World Health Organization. Regional Office for Europe 2002 93 Available https://apps.who.int/iris/handle/10665/107341 accessed 06-Apr-2023
67 Tew J Gell C Foster S Involving service users and carers in mental health education and training Natl Inst Ment Health Engl
68 Towle A Bainbridge L Godolphin W et al Active patient involvement in the education of health professionals Med Educ 2010 44 64 74 10.1111/j.1365-2923.2009.03530.x 20078757
69 Substance Abuse and Mental Health Services Administration S Recovery support tools and resources 2017 Available https://www.samhsa.gov/brss-tacs/recovery-support-tools/peers Accessed 18-Apr-2023
70 Moore GF Audrey S Barker M et al Process evaluation of complex interventions: Medical Research Council guidance BMJ 2015 350 h1258 10.1136/bmj.h1258 25791983
71 Russell J Fudge N Greenhalgh T The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it? Res Involv Engagem 2020 6 63 10.1186/s40900-020-00239-w 33133636
72 Staley K “Is it worth doing?” Measuring the impact of patient and public involvement in research Res Involv Engagem 2015 1 6 6 10.1186/s40900-015-0008-5 29062495
73 Ocloo J Garfield S Franklin BD et al Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews Health Res Policy Syst 2021 19 8 10.1186/s12961-020-00644-3 33472647
74 OECD Paris declaration and accra agenda for action Available https://www.oecd.org/dac/effectiveness/parisdeclarationandaccraagendaforaction.htm Accessed 06-Apr-2023
75 Bate P Robert G Experience-based design: from redesigning the system around the patient to co-designing services with the patient Qual Saf Health Care 2006 15 307 10 10.1136/qshc.2005.016527 17074863
76 Carman KL Dardess P Maurer M et al Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies Health Aff (Millwood) 2013 32 223 31 10.1377/hlthaff.2012.1133 23381514
77 van Gemert-Pijnen JEWC Nijland N van Limburg M et al A holistic framework to improve the uptake and impact of eHealth technologies J Med Internet Res 2011 13 e111 10.2196/jmir.1672 22155738
78 Abimbola S Baatiema L Bigdeli M The impacts of decentralization on health system equity, efficiency and resilience: a realist synthesis of the evidence Health Policy Plan 2019 34 605 17 10.1093/heapol/czz055 31378811
79 NICE Community engagement: improving health and wellbeing and reducing health inequalities | Guidance NICE 2008 Available https://www.nice.org.uk/guidance/ng44/chapter/Update-information Accessed 24-Oct-2023
80 Malena C Forster R Singh J Social accountability - an introduction to the concept and emerging practice The World Bank 2004 Available https://documents1.worldbank.org/curated/en/327691468779445304/pdf/310420PAPER0So1ity0SDP0Civic0no1076.pdf Accessed 24-Oct-2023
81 Healthcare Excellence Canada Engaging patients in patient safety – a Canadian guide Available https://www.healthcareexcellence.ca/en/resources/engaging-patients-in-patient-safety-a-canadian-guide/ Accessed 06-Apr-2023
82 Higgins T Larson E Schnall R Unraveling the meaning of patient engagement: A concept analysis Pat Educ Couns 2017 100 30 6 10.1016/j.pec.2016.09.002
83 Longtin Y Sax H Leape LL et al Patient participation: current knowledge and applicability to patient safety Mayo Clin Proc 2010 85 53 62 10.4065/mcp.2009.0248 20042562
84 Yorkshire Quality and Safety Research Group Patient engagement in patient safety: a framework for the NHS Valid Research Ltd 2016 Available https://www.england.nhs.uk/signuptosafety/wp-content/uploads/sites/16/2016/05/pe-ps-framwrk-apr-16.pdf Accessed 24-Oct-2023
85 WHO, Gordon and Betty Moore Foundation Global expert consultation on the WHO framework on patient and family engagement 2015 Available https://cdn.who.int/media/docs/default-source/patient-safety/pfps/global-consultation-report.pdf
86 Reza-Paul S Lorway R O’Brien N et al Sex worker-led structural interventions in India: a case study on addressing violence in HIV prevention through the Ashodaya Samithi collective in Mysore Indian J Med Res 2012 135 98 106 10.4103/0971-5916.93431 22382190
87 Figueroa ME Kincaid DL Rami M et al Communication for social change: an integrated model for measuring the process and its outcomes. The communication for social change working paper series: No.1, Johns Hopkins University’s Center for Communication programs for the Rockefeller foundation 2002 Available http://archive.cfsc.org/pdf/socialchange.pdf Accessed 24-Oct-2023
88 Rosato M Laverack G Grabman LH et al Community participation: lessons for maternal, newborn, and child health Lancet 2008 372 962 71 10.1016/S0140-6736(08)61406-3 18790319
89 Stone L Cultural influences in community participation in health Soc Sci Med 1992 35 409 17 10.1016/0277-9536(92)90333-l 1519093
90 Wallerstein N Powerlessness, Empowerment, and Health: Implications for Health Promotion Programs Am J Health Promot 1992 6 197 205 10.4278/0890-1171-6.3.197 10146784
91 Caro JF Fisher EB A solution might be within people with diabetes themselves Fam Pract 2010 27 Suppl 1 i1 2 10.1093/fampra/cmn082 20483799
92 Dennis CL Peer support within a health care context: a concept analysis Int J Nurs Stud 2003 40 321 32 10.1016/s0020-7489(02)00092-5 12605954
93 NHS National service framework for mental health, modern standards and service models 1999 Available https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/198051/National_Service_Framework_for_Mental_Health.pdf
94 Simoni JM Franks JC Lehavot K et al Peer interventions to promote health: conceptual considerations Am J Orthopsychiatry 2011 81 351 9 10.1111/j.1939-0025.2011.01103.x 21729015
95 Firth M Kerfoot M Voices in partnership: involving users and carers in commissioning and delivering mental health services (NHS Health Advisory Service thematic review) London: Stationery Office 1997 66
96 Spencer J Blackmore D Heard S et al Patient-oriented learning: a review of the role of the patient in the education of medical students Med Educ 2000 34 851 7 10.1046/j.1365-2923.2000.00779.x 11012935
97 Lathlean J Burgess A Coldham T et al Experiences of service user and carer participation in health care education Nurse Educ Today 2006 26 732 7 10.1016/j.nedt.2006.07.017 17030491
98 General Medical Council Patient and public involvement in undergraduate medical education Tomorrow’s Doctors 2009 Available https://www.gmc-uk.org/-/media/documents/Patient_and_public_involvement_in_undergraduate_medical_education___guidance_0815.pdf_56438926.pdf
99 Rowland P Anderson M Kumagai AK et al Patient involvement in health professionals’ education: a meta-narrative review Adv Health Sci Educ 2019 24 595 617 10.1007/s10459-018-9857-7
