The Expert Patients Programme: a paradox of patient empowerment and medical dominance

Wilson, Patricia M.; Kendall, Sally; Brooks, Fiona

doi:10.1111/j.1365-2524.2007.00701.x

Cited by 121 publications

(129 citation statements)

References 68 publications

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“…The dietician also provided menu suggestions to the patients. Group discussions and sharing the experience of "expert patients" were also used as previous studies found that information is more effectively transferred to and accepted by patients through group communication 9 than by oral education given by medical staff. 10 Group education can help patients to control their protein intake and can help them to achieve other important lifestyle changes that are beneficial for disease therapy.…”

Section: Discussionmentioning

confidence: 99%

Effect of Multi-Dimensional Education on Disease Progression in Pre-Dialysis Patients in China

Jia

Lindholm

2011

Renal Failure

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Background: There is an increasing body of evidence showing that educational interventions aiming at empowering patients are successful in chronic disease management. The aim of this study was to conduct an evaluation of the systematic effectiveness of a multi-dimensional education intervention program in a group of pre-dialysis chronic kidney disease (CKD) patients. In addition, we investigated whether the outcome of the program was related with the amount of education. Methods: We collected data retrospectively from 302 patients with CKD stages 3, 4, and 5, who were followed up from February 2006 to March 2008. The patients were divided into long-time education group and short-time education group depending on the number of provided hours of education. Survival analysis was undertaken to see if the progression of the kidney function differed between these two groups. Results: The percentage of patients receiving long-time education was highest with severe degree of impairment of renal function (45.5%, 61.3%, and 66.7% in CKD stages 3, 4, and 5 groups, respectively). In a multivariate regression analysis, adjusting for age, gender, Charlson comorbidity index, and other traditional risk factors of renal failure, such as smoking, hypertension, and renal function (glomerular filtration rate), the length of time until a decline of renal function by 25% was noted and was significantly shorter in the short-time education group as compared to the long-time education group (p = 0.0334). Conclusion: Multi-component structured empowerment intervention is effective in pre-dialysis CKD patients and may lead to a delay in the progression of kidney disease.

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Section: Discussionmentioning

confidence: 99%

Effect of Multi-Dimensional Education on Disease Progression in Pre-Dialysis Patients in China

Jia

Lindholm

2011

Renal Failure

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“…There is a growing body of evidence that involvement in care leads to improved health outcomes 53,54 and patient experience, 55,56 but less evidence on any impact of PPI on the planning and commissioning of health services. 57 Within the health research arena, the policy approach to PPI has been underpinned by various claims regarding the impact of PPI.…”

Section: Patient and Public Involvement: The Methodological Argumentmentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

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226

281

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BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…46 Training needs to be informed by research. Our study fi ndings point to the need for using direct observation of primary care consultations with patients who have CFS/ME to test our hypothesis that patients and family physicians present their knowledge about CFS/ ME using scientifi c discourse, to explore the reasons why they do so, and to determine whether it leads to a satisfactory understanding of CFS/ME for both patient and physician.…”

Section: Training Issuesmentioning

confidence: 99%

Using Multiple Sources of Knowledge to Reach Clinical Understanding of Chronic Fatigue Syndrome

Chew‐Graham

Cahill²,

Dowrick³

et al. 2008

The Annals of Family Medicine

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PURPOSE Chronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a contentious condition and often a diagnosis of exclusion. Current policy in the United Kingdom recommends management in primary care. We explored how patients with CFS/ME and family physicians understand this condition and how their understanding might affect the primary care consultation. METHODSWe undertook a qualitative study with patients and family physicians from North West England participating in a primary care-based randomized controlled trial (FINE Trial). Data were collected through purposive sampling and in-depth semistructured interviews with 24 patients and 14 family physicians. We analyzed interview transcripts using constant comparison methods. RESULTSFamily physicians access social and cultural knowledge to reach a clinical understanding of CFS/ME and its management. Patients recognize the diffi culties family physicians encounter in understanding their symptoms and access similar nonclinical sources of information. We suggest that both patients and physicians use biomedical discourse within the consultation: the physician to maintain the position as an expert, the patient to engage the physician. CONCLUSIONSFamily physicians obtain information about CFS/ME from their nonprofessional world, which they incorporate into their professional realm. Patients and physicians describe the use of the discourse of science within consultations about CFS/ME. This form of shared understanding could lead to a positive collaborative interaction. Family physicians need a biomedical, evidence-based knowledge about CFS/ME. There is potential to use the rich knowledge base that patients can bring to consultations in training initiatives directed at family physicians. Ann Fam Med 2008;6:340-348. DOI: 10.1370/afm.867. INTRODUCTIONC hronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a chronic incapacitating illness that leads to individual disability 1 and lost productivity. 2,3 The annual economic impact of chronic fatigue syndrome in the United States is estimated to be $9.1 billion in lost productivity, not including medical costs or disability payments. The average family affected by CFS/ME loses $20,000 a year in wages and earnings.1 Patients usually experience multiple additional symptoms, 4 commonly with comorbid psychiatric disorders. 5 Prognosis is poor 6 and is accompanied by functional impairment and reduced quality of life. 7 Persons with CFS/ME are high users of health care services and more likely than others to be out of work. 8 The diagnosis is surrounded by controversy. 9 Most researchers now accept the view that CFS/ME is multifactorial and distinguish among factors that predispose, precipitate, and perpetuate the condition. In 2002 the UK Department of Health recommended that CFS/ME should be managed wherever possible in the community by family physicians supported by local multidisciplinary teams. 11 In the absence of a fi rm evidence base for treatment of CFS/ME in primary care, this recommendation was ...

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The Expert Patients Programme: a paradox of patient empowerment and medical dominance

Cited by 121 publications

References 68 publications

Effect of Multi-Dimensional Education on Disease Progression in Pre-Dialysis Patients in China

Effect of Multi-Dimensional Education on Disease Progression in Pre-Dialysis Patients in China

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Using Multiple Sources of Knowledge to Reach Clinical Understanding of Chronic Fatigue Syndrome

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