Systematic review of involving patients in the planning and development of health care
TL;DR: Evidence supports the notion that involving patients has contributed to changes in the provision of services across a range of different settings, and an evidence base for the effects on use of services, quality of care, satisfaction, or health of patients does not exist.
Abstract: Objective To examine the effects of involving patients in the planning and development of health care. Data sources Published and grey literature. Study selection Systematic search for worldwide reports written in English between January 1966 and October 2000. Data extraction Qualitative review of papers describing the effects of involving patients in the planning and development of health care. Results Of 42 papers identified, 31 (74%) were case studies. Papers often described changes to services that were attributed to involving patients, including attempts to make services more accessible and producing information leaflets for patients. Changes in the attitudes of organisations to involving patients and positive responses from patients who took part in initiatives were also reported. Conclusions Evidence supports the notion that involving patients has contributed to changes in the provision of services across a range of different settings. An evidence base for the effects on use of services, quality of care, satisfaction, or health of patients does not exist.
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TL;DR: Evidence of moderate quality of the effectiveness of LHWs in promoting immunisation childhood uptake is found and low quality evidence that LHWs may reduce child morbidity is found.
Abstract: Background
Lay health workers (LHWs) are widely used to provide care for a broad range of health issues. Little is known, however, about the effectiveness of LHW interventions.
Objectives
To assess the effects of LHW interventions in primary and community health care on maternal and child health and the management of infectious diseases.
Search methods
For the current version of this review we searched The Cochrane Central Register of Controlled Trials (including citations uploaded from the EPOC and the CCRG registers) (The Cochrane Library 2009, Issue 1 Online) (searched 18 February 2009); MEDLINE, Ovid (1950 to February Week 1 2009) (searched 17 February 2009); MEDLINE In-Process & Other Non-Indexed Citations, Ovid (February 13 2009) (searched 17 February 2009); EMBASE, Ovid (1980 to 2009 Week 05) (searched 18 February 2009); AMED, Ovid (1985 to February 2009) (searched 19 February 2009); British Nursing Index and Archive, Ovid (1985 to February 2009) (searched 17 February 2009); CINAHL, Ebsco 1981 to present (searched 07 February 2010); POPLINE (searched 25 February 2009); WHOLIS (searched 16 April 2009); Science Citation Index and Social Sciences Citation Index (ISI Web of Science) (1975 to present) (searched 10 August 2006 and 10 February 2010). We also searched the reference lists of all included papers and relevant reviews, and contacted study authors and researchers in the field for additional papers.
Selection criteria
Randomised controlled trials of any intervention delivered by LHWs (paid or voluntary) in primary or community health care and intended to improve maternal or child health or the management of infectious diseases. A 'lay health worker' was defined as any health worker carrying out functions related to healthcare delivery, trained in some way in the context of the intervention, and having no formal professional or paraprofessional certificate or tertiary education degree. There were no restrictions on care recipients.
Data collection and analysis
Two review authors independently extracted data using a standard form and assessed risk of bias. Studies that compared broadly similar types of interventions were grouped together. Where feasible, the study results were combined and an overall estimate of effect obtained.
Main results
Eighty-two studies met the inclusion criteria. These showed considerable diversity in the targeted health issue and the aims, content, and outcomes of interventions. The majority were conducted in high income countries (n = 55) but many of these focused on low income and minority populations. The diversity of included studies limited meta-analysis to outcomes for four study groups. These analyses found evidence of moderate quality of the effectiveness of LHWs in promoting immunisation childhood uptake (RR 1.22, 95% CI 1.10 to 1.37; P = 0.0004); promoting initiation of breastfeeding (RR = 1.36, 95% CI 1.14 to 1.61; P < 0.00001), any breastfeeding (RR 1.24, 95% CI 1.10 to 1.39; P = 0.0004), and exclusive breastfeeding (RR 2.78, 95% CI 1.74 to 4.44; P <0.0001); and improving pulmonary TB cure rates (RR 1.22 (95% CI 1.13 to 1.31) P <0.0001), when compared to usual care. There was moderate quality evidence that LHW support had little or no effect on TB preventive treatment completion (RR 1.00, 95% CI 0.92 to 1.09; P = 0.99). There was also low quality evidence that LHWs may reduce child morbidity (RR 0.86, 95% CI 0.75 to 0.99; P = 0.03) and child (RR 0.75, 95% CI 0.55 to 1.03; P = 0.07) and neonatal (RR 0.76, 95% CI 0.57 to 1.02; P = 0.07) mortality, and increase the likelihood of seeking care for childhood illness (RR 1.33, 95% CI 0.86 to 2.05; P = 0.20). For other health issues, the evidence is insufficient to draw conclusions regarding effectiveness, or to enable the identification of specific LHW training or intervention strategies likely to be most effective.
Authors' conclusions
LHWs provide promising benefits in promoting immunisation uptake and breastfeeding, improving TB treatment outcomes, and reducing child morbidity and mortality when compared to usual care. For other health issues, evidence is insufficient to draw conclusions about the effects of LHWs.
875 citations
TL;DR: Current models of PPI are too narrow, and few organisations mention empowerment or address equality and diversity in their involvement strategies, and these aspects of involvement should receive greater attention.
Abstract: Background There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and internationally increase the urgency and importance of addressing this problem. Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement.
Methods A selective narrative literature search was guided by the authors’ broad expertise, covering a range of disciplines across health and social care, policy and research. Published systematic literature reviews were used to identify relevant authors and publications. Google and hand searches of journal articles and reference lists and reports augmented identification of recent evidence.
Results Patients and the wider public can be involved at most stages of healthcare, and this can have a number of benefits. Uncertainty persists about why and how to do involvement well and evaluate its impact, how to involve and support a diversity of individuals, and in ways that allow them to work in partnership to genuinely influence decision-making. This exposes patient and public involvement (PPI) to criticisms of exclusivity and tokenism.
Conclusions Current models of PPI are too narrow, and few organisations mention empowerment or address equality and diversity in their involvement strategies. These aspects of involvement should receive greater attention, as well as the adoption of models and frameworks that enable power and decision-making to be shared more equitably with patients and the public in designing, planning and co-producing healthcare.
571 citations
TL;DR: It can be concluded that patient empowerment is a much broader concept than just patient participation and patient-centeredness and may provide a useful framework that researchers, policy makers and health care providers can use to facilitate patient empowerment.
571 citations
TL;DR: For example, Nilsen et al. as discussed by the authors reviewed the effects of consumer involvement in health care and compared different methods of involvement in developing healthcare policy and research, clinical practice guidelines, and patient information material.
Abstract: Background
The importance of consumer involvement in health care is widely recognised Consumers can be involved in developing healthcare policy and research, clinical practice guidelines and patient information material, through consultations to elicit their views or through collaborative processes Consultations can be single events, or repeated events, large or small scale They can involve individuals or groups of consumers to allow debate; the groups may be convened especially for the consultation or be established consumer organisations They can be organised in different forums and through different media
Objectives
To assess the effects of consumer involvement and compare different methods of involvement in developing healthcare policy and research, clinical practice guidelines, and patient information material
Search methods
For the 2006 version of this review (Nilsen 2006) we searched: the Cochrane Consumers and Communication Review Group's Specialised Register (4 May 2006); the Cochrane Controlled Trials Register (CENTRAL) (The Cochrane Library, Issue 1 2006), MEDLINE (1966 to January Week 2 2006); EMBASE (1980 to Week 03 2006); CINAHL (1982 to December Week 2 2005), PsycINFO (1806 to January Week 3 2006); Sociological Abstracts (1952 to 24 January 2006); and SIGLE (System for Information on Grey Literature in Europe) (1980 to 2003/1) We scanned reference lists from relevant articles and contacted authors
For the 2009 update we revised the previous search strategies and searched: the Cochrane Central Register of Controlled Trials (CENTRAL), including the Cochrane Consumers and Communication Review Group's Specialised Register (The Cochrane Library, Issue 2 2009), MEDLINE (1950 to May Week 1 2009); EMBASE (1980 to Week 19 2009); CINAHL (1981 to 8 July 2009), PsycINFO (1806 to May Week 1 2009); Sociological Abstracts (1952 to 11 May 2009) We did not search OpenSIGLE for the review update We scanned reference lists from relevant articles and searched the Science Citation Index Expanded and the Social Sciences Citation Index (1975 to 9 September 2009) for studies citing the included studies in this review
Selection criteria
Randomised controlled trials assessing methods for involving consumers in developing healthcare policy and research, clinical practice guidelines or patient information material The outcome measures were: participation or response rates of consumers; consumer views elicited; consumer influence on decisions, healthcare outcomes or resource utilisation; consumers' or professionals' satisfaction with the involvement process or resulting products; impact on the participating consumers; costs
Data collection and analysis
Two review authors independently selected trials for inclusion, assessed their quality and extracted data We contacted trial authors for clarification and to seek missing data We presented results in a narrative summary and pooled data as appropriate
Main results
We included six randomised controlled trials with moderate or high risk of bias, involving 2123 participants There is moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety This 'consumer-informed' material can also improve patients' knowledge There is low quality evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results There is low quality evidence that an informed consent document developed with consumer input (potential trial participants) may have little if any impact on understanding compared to a consent document developed by trial investigators only There is very low quality evidence that telephone discussions and face-to-face group meetings engage consumers better than mailed surveys in order to set priorities for community health goals They also result in different priorities being set for these goals
Authors' conclusions
There is little evidence from randomised controlled trials of the effects of consumer involvement in healthcare decisions at the population level The trials included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of involving consumers in these decisions
549 citations
TL;DR: The authors identified ten key challenges: convincing people that there is a problem that is relevant to them; convincing them that the solution chosen is the right one; getting data collection and monitoring systems right; excess ambitions and ‘projectness’; organisational cultures, capacities and contexts; tribalism and lack of staff engagement.
Abstract: Background Formal evaluations of programmes are an important source of learning about the challenges faced in improving quality in healthcare and how they can be addressed. The authors aimed to integrate lessons from evaluations of the Health Foundation's improvement programmes with relevant literature.
Methods The authors analysed evaluation reports relating to five Health Foundation improvement programmes using a form of ‘best fit’ synthesis, where a pre-existing framework was used for initial coding and then updated in response to the emerging analysis. A rapid narrative review of relevant literature was also undertaken.
Results The authors identified ten key challenges: convincing people that there is a problem that is relevant to them; convincing them that the solution chosen is the right one; getting data collection and monitoring systems right; excess ambitions and ‘projectness’; organisational cultures, capacities and contexts; tribalism and lack of staff engagement; leadership; incentivising participation and ‘hard edges’; securing sustainability; and risk of unintended consequences. The authors identified a range of tactics that may be used to respond to these challenges.
Discussion Securing improvement may be hard and slow and faces many challenges. Formal evaluations assist in recognising the nature of these challenges and help in addressing them.
488 citations
References
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01 Jan 2000
TL;DR: The author revealed that within the context of the changing concepts of Health and Illness, the concept of a “one-size-fits-all” approach to health care reform was no longer viable and a new “two-tier” system was needed.
Abstract: Introduction - Gary L Albrecht, Ray Fitzpatrick and Susan C Scrimshaw PART ONE: SOCIAL AND CULTURAL FRAMEWORKS OF ANALYSIS The History of the Changing Concepts of Health and Illness - Bryan S Turner Outline of a General Model of Illness Categories Social Theorizing about Health and Illness - David Armstrong Classification and Process in Sociomedical Understanding - Robert A Rubinstein, Susan C Scrimshaw and Suzanne E Morrisey Towards a Multilevel View of Sociomedical Methodology The Social Construction of Medicine and the Body - Deborah Lupton A Taxonomy of Research Concerned with Place and Health - Ralph Catalano and Kate E Pickett The Globalization of Health and Disease - Emily C Zielinski Guti[ac]errez and Carl Kendall The Health Transition and Global Change The Social Causation of Health and Illness - Johannes Siegrist Socioeconomic Inequalities in Health - Stephanie A Robert and James S House Integrating Individual-, Community-, and Societal-Level Theory and Research Gender and Health - Sandra D Lane and Donald A Cibula Critical Perspectives on Health and Aging - Carroll L Estes and Karen W Linkins The Social Context of the New Genetics - Sarah Cunningham-Burley and Mary Boulton PART TWO: THE EXPERIENCE OF HEALTH AND ILLNESS Cultural Variation in the Experience of Health and Illness - Ann McElroy and Mary Ann Jezewski Ethnography and Network Analysis - Robert T Trotter II The Study of Social Context in Cultures and Societies Personal Experience of Illness - Arthur Kleinman and Don Seeman Clinical Narratives and the Study of Contemporary Doctor-Patient Relationships - Mary-Jo DelVecchio Good and Byron J Good Accounting for Disease and Distress - Margaret Lock Morals of the Normal and Abnormal Experiencing Chronic Illness - Kathy Charmaz The Global Emergence of Disability - Gary L Albrecht and Lois M Verbrugge Reproduction and Assisted Reproductive Technologies - Hel[ac]ena Ragon[ac]e and Sharla K Willis Health-Care Utilization and Barriers to Health Care - Judith D Kasper Concepts and Measurement of Health Status and Health-Related Quality of Life - Colleen A McHorney Health Behavior - Thomas R Prohaska, Karen E Peters and Jan S Warren From Research to Community Practice PART THREE: HEALTH-CARE SYSTEMS AND PRACTICES The Medical Profession - David Coburn and Evan Willis Knowledge, Power, and Autonomy The Sociological Character of Health-Care Markets - Donald W Light Medical Uncertainty Revisited - Ren[ac]ee C Fox Alternative Health Practices and Systems - Sarah Cant and Ursula Sharma Comparative Health Sytems - Linda M Whiteford and Lois LaCivita Nixon Emerging Convergences and Globalization The Patient's Perspective Regarding Appropriate Health Care - Angela Coulter and Ray Fitzpatrick Consumer and Community Participation - Deena White A Reassessment of Process, Impact and Value An Expanded Conceptual Framework of Equity - Lu Ann Aday Implications for Assessing Health Policy Resources and Rationing - Stephen Harrison and Michael Moran Managing Supply and Demand in Health Care Reconfiguring Health Policy - Steven Lewis, Marcel Saulnier and Marc Renaud Simple Truths, Complex Solutions
416 citations
01 Mar 1998
TL;DR: In the UK National Health Service, public consultation is a local attempt to include organized groups of service users in the planning, and occasionally the management, of such services as discussed by the authors, while user involvement is an attempt to involve groups of users in such services.
Abstract: This paper concerns two practices, public consultation and user involvement, whose adoption has been urged upon the UK National Health Service in recent years. Public consultation is a local attempt to seek the views of a broad constituency of persons. User involvement is a local attempt to include organized groups of service users in the planning, and occasionally the management, of such services. The paper has four objectives. First, it locates the topic in the context of several related current debates. Second, it outlines the main findings of a recent empirical study of public consultation as they relate to the above debates. Third, it summarizes the relevant findings of an empirical study of user involvement. Finally, it examines these two practices as "technologies of legitimation" which can be seen as a means by which managerial legitimacy is maintained in the context of an increasingly pluralistic policy arena.
241 citations
TL;DR: These two practices, public consultation and user involvement, are examined as "technologies of legitimation" which can be seen as a means by which managerial legitimacy is maintained in the context of an increasingly pluralistic policy arena.
Abstract: This paper concerns two practices, public consultation and user involvement, whose adoption has been urged upon the UK National Health Service in recent years. Public consultation is a local attempt to seek the views of a broad constituency of persons. User involvement is a local attempt to include organized groups of service users in the planning, and occasionally the management, of such services. The paper has four objectives. First, it locates the topic in the context of several related current debates. Second, it outlines the main findings of a recent empirical study of public consultation as they relate to the above debates. Third, it summarizes the relevant findings of an empirical study of user involvement. Finally, it examines these two practices as “technologies of legitimation” which can be seen as a means by which managerial legitimacy is maintained in the context of an increasingly pluralistic policy arena.
214 citations
Book•
14 Jan 1993
TL;DR: The first steps to citizen-involvement: Information Gathering and Consultation - From More Responsive Services to a Direct Say in Decision-making - Key Components for Effective Involvement as discussed by the authors.
Abstract: Acknowledgements - Introduction - Making Sense of Citizen-Involvement - First Steps To Involvement: Information Gathering and Consultation - From More Responsive Services to a Direct Say in Decision-making - Key Components for Effective Involvement - Guidelines for Involvement: The Agency Perspective - Getting Involved with Other People: Moving from Individual to Collective Action - Guidelines for Involvement: Empowering Ourselves - Guidelines for Involvement: Developing an Empowering Practice as Workers - Towards a Policy for Citizen-Involvement - Further Reading - Index
207 citations
01 Jan 2001
TL;DR: In this paper, the authors present an overview of social science methods applied to micro-level settings, including: Organisational Studies, Social Science Methods Applied to Micro-Level Settings, Epidemiological Research Methods, Action Research, Political Science / Policy Analysis 7. Economic Evaluation Methods 8. Historical Research 10. Operational Research 11. Synthesising Research Evidence
Abstract: Introduction : Overview 1. Organisational Studies 2. Social Science Methods Applied to Micro-Level Settings 3. Epidemiological Research Methods 4. Organisational Psychology 5. Action Research 6. Political Science / Policy Analysis 7. Economic Evaluation Methods 8. Organisational Economics 9. Historical Research 10. Operational Research 11. Synthesising Research Evidence
203 citations