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      Patient and public involvement: how much do we spend and what are the benefits?

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          Abstract

          Background and objectives

          Patient and public involvement ( PPI) is seen as a way of helping to shape health policy and ensure a patient‐focused health‐care system. While evidence indicates that PPI can improve health‐care decision making, it also consumes monetary and non‐monetary resources. Given the financial climate, it is important to start thinking about the costs and benefits of PPI and how to evaluate it in economic terms.

          Design

          We conducted a literature review to assess the potential benefits and costs of involvement and the challenges in carrying out an economic evaluation of PPI.

          Results

          The benefits of PPI include effects on the design of new projects or services, on NHS governance, on research design and implementation and on citizenship and equity. Economic evaluation of PPI activities is limited. The lack of an appropriate analytical framework, data recording and understanding of the potential costs and benefits of PPI, especially from participants' perspectives, represent serious constraints on the full evaluation of PPI.

          Conclusions

          By recognizing the value of PPI, health‐care providers and commissioners can embed it more effectively within their organizations. Better knowledge of costs may prompt organizations to effectively plan, execute, evaluate and target resources. This should increase the likelihood of more meaningful activity, avoid tokenism and enhance organizational efficiency and reputation.

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          Most cited references40

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          The meaning of patient involvement and participation in health care consultations: a taxonomy.

          A number of trends, pressures and policy shifts can be identified that are promoting greater patient involvement in health care delivery through consultations, treatments and continuing care. However, while the literature is growing fast on different methods of involvement, little attention has been given so far to the role which patients themselves wish to play, nor even of the conceptual meanings behind involvement or participation. This article reviews the current models of involvement in health care delivery as derived from studies of professional views of current and potential practice, prior to examining the empirical evidence from a large-scale qualitative study of the views and preferences of citizens, as patients, members of voluntary groups, or neither. Individual domiciliary interviews were carried out with 44 people recruited from GP practices in northern England. These respondents were then included in a second phase of 34 focus groups in 6 different localities in northern and southern England, of which 22 were with individuals unaffiliated to any voluntary/community groups, 6 related to local voluntary/community groups with specific interests in health or health care, and 6 related to groups without such specific interests. A final set of 12 workshops with the same samples helped to confirm emergent themes. The qualitative data enabled a taxonomy of patient-desired involvement to be derived, which is contrasted with professional-determined levels of involvement identified from the literature. Participation is seen as being co-determined by patients and professionals, and occurring only through the reciprocal relationships of dialogue and shared decision-making. Not everyone wanted to be involved and the extent to which involvement was desired depended on the contexts of type and seriousness of illness, various personal characteristics and patients' relationships with professionals. These levels are seen to provide basic building blocks for a more sophisticated understanding of involvement within and between these contexts for use by professionals, managers, policy-makers and researchers.
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            The experiential knowledge of patients: a new resource for biomedical research?

            Both governments and patients' movements are increasingly making a plea in favour of the active participation of patients in biomedical research processes. One of the arguments concerns the contribution that patients could make to the relevance and quality of biomedical research based on their 'experiential knowledge'. This article reflects on the validity of patients' experiential knowledge in the context of biomedical research processes. Since a conclusive argument on the validity of patients' experiential knowledge could not be reached on the basis of theoretical reflection alone, a pragmatic approach was chosen that assessed the validity of patients' experiential knowledge in terms of its practical usefulness for biomedical research. Examples of patient participation in biomedical research were sought through literature research and more than 60 interviews with (bio)medical scientists, patients, representatives from patients' organisations, and health professionals in the Netherlands and the United Kingdom. These examples were analysed for a concrete contribution by patients to the research process. Twenty-one cases of patient participation in biomedical research were identified. After further analysis, concrete use of patients' experiential knowledge could be traced for nine of these cases. These findings suggest that patients' experiential knowledge, when translated into explicit demands, ideas, or judgements, can contribute to the relevance and quality of biomedical research. However, its deliberate use would require a more structural and interactive approach to patient participation. Since the implementation of such an approach could face various obstacles in current biomedical research practices, further research will be needed to investigate its feasibility.
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              Consumer involvement in health research: a review and research agenda.

              The involvement of consumers in health research is now Department of Health policy within the UK. Despite the existence of policy directives, there is a dearth of knowledge on the effects of such involvement. This paper critically reviews the state of our knowledge on this issue, and maps out a research agenda with the aim of stimulating systematic, empirical inquiry into consumer involvement in health research. The paper discusses definitions of 'the consumer'; considers why consumer involvement is believed to be important to health research; traces the development of the policy; analyses the epistemological and methodological implications of the policy; discusses the various levels of consumer involvement in research; and outlines the objections to the policy that have been put forward by clinicians and researchers. Four questions were identified during the review as being in need of theoretical and empirical attention: (1) how can consumer involvement in health research be further conceptualised? (2) how and why does consumer involvement influence health research? (3) how can the influence of consumers in health research be measured and evaluated? and (4) what factors are associated with 'successful' consumer involvement in health research?
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                Author and article information

                Contributors
                Role: Research Associate
                Role: Programme Lead for Evaluation
                Role: Programme Lead for Patient and Public Involvement
                Role: Professor
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                12 May 2014
                December 2015
                : 18
                : 6 ( doiID: 10.1111/hex.2015.18.issue-6 )
                : 1918-1926
                Affiliations
                [ 1 ] Imperial College Business School London UK
                [ 2 ] NIHR CLAHRC for Northwest London Chelsea and Westminster Hospital NHS Foundation Trust London UK
                [ 3 ] Technology and Innovation Management Imperial College Business School London UK
                Author notes
                [*] [* ] Correspondence

                Elena Pizzo, PhD

                Research Associate

                Imperial College

                Business School

                Tanaka Building

                South Kensington Campus

                London SW7 2AZ

                UK

                E‐mail: e.pizzo@ 123456imperial.ac.uk

                Article
                HEX12204
                10.1111/hex.12204
                5810684
                24813243
                0541ce65-de2c-4f7a-970c-56ad9a9eb1fd
                © 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.

                History
                : 02 April 2014
                Page count
                Pages: 9
                Funding
                Funded by: National Institute for Health Research (NIHR)
                Funded by: Collaborations for Leadership in Applied Health Research and Care (CLAHRC)
                Categories
                Review Article
                Review Articles
                Custom metadata
                2.0
                hex12204
                December 2015
                Converter:WILEY_ML3GV2_TO_NLMPMC version:version=5.3.2.2 mode:remove_FC converted:12.02.2018

                Health & Social care
                benefits,costs,engagement,involvement,patient and public involvement,public
                Health & Social care
                benefits, costs, engagement, involvement, patient and public involvement, public

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