A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities

Brett, Jo; Staniszewska, Sophie; Mockford, Carole; Herron-Marx, Sandra; Hughes, John; Tysall, Colin; Suleman, Rashida

doi:10.1007/s40271-014-0065-0

Cited by 550 publications

(789 citation statements)

References 59 publications

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“…6,7 Second, people coming into projects without a research background may require orientation in order to participate fully. 8 Third, benefits of partnership may be difficult to formally assess. 9 Fourth, time requirements are a frequent concern for everyone.…”

Section: Introductionmentioning

confidence: 99%

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Witteman

Dansokho

Colquhoun³

et al. 2018

J GEN INTERN MED

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Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication.Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations. INTRODUCTIONHealth research teams increasingly include patients, caregivers, clinicians, and other stakeholders whose primary careers are not health research. This may occur because team leaders are convinced of the merits of such an approach, because funders or publishers require it, or both. 1-4 Such partnerships are intended to increase the relevance of research to those who might benefit from it and thus to reduce research waste. 5 This is an excellent and laudable aim; however, there is relatively little practical guidance available about how to effectively conduct such partnered research.Previous reviews and evaluations demonstrate four points about conducting partnered research. First, research teams with patients, caregivers, and other stakeholder team members tend to involve these stakeholders more at earlier stages in the project than at later stages. 6,7 Second, people coming into projects without a research background may require orientation in order to participate fully. 8 Third, benefits of partnership may be difficult to formally assess. 9 Fourth, time requirements are a frequent concern for everyone. 7,10 These reviews offer valuable evidence syntheses relevant to partnership, as do recommendations from long-standing traditions of methods 558JGIM such as community-based participatory research 11 and participatory action research. 12 However, as partnered research expands across research types and funding opportunities, more people are engaging in team structures that are new to them. Available frameworks suggest structures for partnerships, [13][14][15][16] and literature promotes broad principles such as addressing issues of power and equity [17][18][19...

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Section: Introductionmentioning

confidence: 99%

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Witteman

Dansokho

Colquhoun³

et al. 2018

J GEN INTERN MED

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“…[172][173][174][175] The benefits of such involvement in health and social care research are manifold. Service users can provide valuable knowledge and insights to research, [176][177][178][179][180][181] encourage recruitment through publicity, 177,179,180 improve quality, relevance and impact of research, [182][183][184][185][186] and potentially help to meet recruitment targets. 172 Service users in England contribute financially to publicly funded research, so, arguably, have a right to be involved 186,187 and can personally benefit from their involvement.…”

Section: Introductionmentioning

confidence: 99%

“…172 Service users in England contribute financially to publicly funded research, so, arguably, have a right to be involved 186,187 and can personally benefit from their involvement. 183,185,188 However, challenges to the successful involvement of service users in research include contrasting priorities, 183,189,190 understanding of research methods, 189 use of language and jargon, 189 and lack of time and resources. 183,189 The involvement of people with ID in research can pose additional challenges to those outlined above and include the need to plan ahead, allow time for effective communication and regular breaks, and ensure that meeting locations are accessible to all.…”

Section: Introductionmentioning

confidence: 99%

“…183,185,188 However, challenges to the successful involvement of service users in research include contrasting priorities, 183,189,190 understanding of research methods, 189 use of language and jargon, 189 and lack of time and resources. 183,189 The involvement of people with ID in research can pose additional challenges to those outlined above and include the need to plan ahead, allow time for effective communication and regular breaks, and ensure that meeting locations are accessible to all. [191][192][193][194] Such challenges can be at odds with researchers' own demands and priorities, 195 and they often resort to seeking the proxy views of 'sympathetic others', such as parents or carers, 196 which is disappointing given that people with ID have a lot to say and can improve the quality and relevance of research.…”

Section: Introductionmentioning

confidence: 99%

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Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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BackgroundThe prevalence of type 2 diabetes mellitus (T2DM) and of cardiovascular disease (CVD) is believed to be higher among people with intellectual disability (ID) than in the general population. However, research on prevalence and prevention in this population is limited.ObjectivesThe objectives of this programme of work were to establish a programme of research that would significantly enhance the knowledge and understanding of impaired glucose regulation (IGR) and T2DM in people with ID; to test strategies for the early identification of IGR and T2DM in people with ID; and to develop a lifestyle education programme and educator training protocol to promote behaviour change in a population with ID and IGR (or at a high risk of T2DM/CVD).SettingLeicestershire, UK.ParticipantsAdults with ID were recruited from community settings, including residential homes and family homes. Adults with mild to moderate ID who had an elevated body mass index (BMI) of ≥ 25 kg/m2and/or IGR were invited to take part in the education programme.Main outcome measuresThe primary outcome of the screening programme was the prevalence of screen-detected T2DM and IGR. The uptake, feasibility and acceptability of the intervention were assessed.Data sourcesParticipants were recruited from general practices, specialist ID services and clinics, and through direct contact.ResultsA total of 930 people with ID were recruited to the screening programme: 58% were male, 80% were white and 68% were overweight or obese. The mean age of participants was 43.3 years (standard deviation 14.2 years). Bloods were obtained for 675 participants (73%). The prevalence of previously undiagnosed T2DM was 1.3% [95% confidence interval (CI) 0.5% to 2%] and of IGR was 5% (95% CI 4% to 7%). Abnormal IGR was more common in those of non-white ethnicity; those with a first-degree family history of diabetes; those with increasing weight, waist circumference, BMI, diastolic blood pressure or triglycerides; and those with lower high-density lipoprotein cholesterol. We developed a lifestyle educational programme for people with ID, informed by findings from qualitative stakeholder interviews (health-care professionals,n = 14; people with ID,n = 7) and evidence reviews. Subsequently, 11 people with ID (and carers) participated in pilot education sessions (two groups) and five people attended education for the feasibility stage (one group). We found that it was feasible to collect primary outcome measures on physical activity and sedentary behaviour using wrist-worn accelerometers. We found that the programme was relatively costly, meaning that large changes in activity or diet (or a reduction in programme costs) would be necessary for the programme to be cost-effective. We also developed a quality development process for assessing intervention fidelity.LimitationsWe were able to screen only around 30% of the population and involved only a small number in the piloting and feasibility work.ConclusionsThe results from this programme of work have significantly enhanced the existing knowledge and understanding of T2DM and IGR in people with ID. We have developed a lifestyle education programme and educator training protocol to promote behaviour change in this population.Future workFurther work is needed to evaluate the STOP Diabetes intervention to identify cost-effective strategies for its implementation.Trial registrationClinicalTrials.gov NCT02513277.FundingThe National Institute for Health Research Programme Grants for Applied Research programme and will be published in full inHealth Research Programme Grants for Applied Research; Vol. 5, No. 11. See the NIHR Journals Library website for further project information.

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“…An increasing number of reports are being published as to the impact PPI can have on programmes of research (Brett, 2015, Staley, 2015. For example, a beneficial impact on ethical aspects (INVOLVE, 2012) has been identified.…”

Section: Introductionmentioning

confidence: 99%

Developing involvement during a programme of recovery research

Slade

Trivedi²,

Chandler

et al. 2016

JMHTEP

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2 Abstract PurposeTo consider the process of working with a Lived Experience Advisory Group (LEAP) and its outcomes in REFOCUS, a large 5 year programme of recovery research. DesignNarrative reflections on the experience of working with LEAP were collected from five members and the Chair of LEAP, two REFOCUS researchers and the Principal Investigator (PI). These were synthesised to show both the process and outcomes of LEAP involvement in REFOCUS, and how involvement evolved organically over time. FindingsIndividual reflective accounts showed how working with LEAP impacted (to a greater or lesser extent) on each individual involved in the process, providing new insights and influencing, to varying degrees, the way in which they then worked with LEAP.

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A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities

Cited by 550 publications

References 59 publications

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Developing involvement during a programme of recovery research

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