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Patient and Public Involvement in Health and Social Care Research: A Bibliography

Compiled by Dr Jonathan Boote, Research Fellow,

NIHR Research Design Service for Yorkshire and the Humber



Last revised on 07/11/2011



INTRODUCTION AND SCOPE OF THE BIBLIOGRAPHY
This bibliography is intended to provide readers with a guide to the literature published in English on patient and public involvement (PPI) in health and social care research. INVOLVE, the body responsible for promoting patient and public involvement in research in England, defines ‘involvement’ as:
“an active partnership between the public and researchers in the research process, rather than the use of people as the ‘subjects’ of research. Active involvement may take the form of consultation, collaboration or user control. Many people define public involvement in research as doing research ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ the public. This would include, for example, public involvement in advising on a research project, assisting in the design of a project, or in carrying out the research”.
This bibliography provides details on policy documents and guidance on patient and public involvement, as well book chapters, books and peer-reviewed papers on aspects of patient and public involvement in health and social care research. It should be noted that different terms are used for ‘patient and public’ in the literature: other terms used are ‘consumer, ‘user’, ‘service user’, ‘client’ ‘community’ and ‘lay’. The bibliography focuses exclusively on PPI in health and social care research. As such, papers that focus on PPI in service development and clinical audit have been excluded, as have papers that focus on issues relating to the involvement of people in research in areas other than health and social care.
The bibliography is divided into four parts: (1) policy documents, reports and guides; (2) book chapters; (3) books; and (4) peer-reviewed journal articles. Many of the reports featured in this bibliography can be downloaded from the Internet: where appropriate, therefore, hyperlinks have been provided. Peer-reviewed journal articles have been thematically subdivided into the following sections.


  • General introductory papers on PPI in health and social care research

  • PPI in identification of research questions and research prioritisation

  • PPI in research design and protocol development

  • PPI in peer review of research proposals and funding decisions

  • PPI in medical device/intervention development

  • Involvement of older people in health and social care research

  • Involvement of young people and parents in health and social care research

  • Involvement of people with learning difficulties in health and social care research

  • Involvement of people with mental health problems in health and social care research

  • Involvement of people with cancer in health and social care research

  • PPI in research advisory groups and other committees

  • PPI in data collection

  • PPI in analysing and interpreting data

  • PPI in secondary research and health technology assessment

  • Reflections on and examples of user-led health and social care research

  • Discussion papers on participatory research, action research or community-based methods in health and social care research

  • Health or social care research using participatory or action research methods, or community-based methods

Peer-reviewed journal articles are only listed once in this bibliography. As can be surmised from the above thematic list, there were occasions when a paper could have been placed in more than thematic category. The compiler’s judgement was used in allocating each paper to the theme thought most appropriate. Readers may disagree on occasions as to the thematic placing of a certain paper.


DATABASES INITIALLY SEARCHED AND SEARCH TERMS USED
A search was undertaken in January 2009 by Information Resources, School of Health and Related Research, University of Sheffield, of the following databases: PsycINFO, MEDLINE, CINAHL, EMBASE and the invoNET database. All articles published in English on the topic of PPI in research from 1995 to the present day were searched for. Search terms included ’consumer’, ‘user’, ‘participant’, involvement’, ‘inclusion’, and ‘research’. Papers were included on the basis of title and, where it was available, the abstract. It is possible therefore that, in the case of reports of primary research, papers may have been excluded from the bibliography when detail about the public involvement in the study was provided in the main text of the paper only, and where PPI was not apparent from the title, detail of authorship and/or the study abstract.
Note that the database search identified almost exclusively peer-reviewed journal articles only. Books, book chapters, reports and guidance documents have been identified through the compiler’s personal knowledge of the field. Therefore, there are likely to be omissions to the list of books, book chapters, reports and guidance documents as the bibliography currently stands.



A detailed consideration of the searches undertaken – by Claire Beecroft, Information Specialist – Research Support, School of Health and Related Research, University of Sheffield

Searching for papers on PPI in research is complicated by the fact that currently none of the major health databases have a subject heading to describe PPI specifically in the research process. Thus for this search the following strategies were used:


Medline/CINAHL - these databases both have a subject heading called ‘consumer participation’- this is used for papers on participation in research, but also in decision-making etc, so it retrieves many thousands of results. To improve the accuracy of the results, limits were applied to restrict to papers which also included the word stems ‘involv*’ or ‘research*’ in the title or abstract, were written in English, had an abstract and were published from 1995 to the present date.
EMBASE - this database does not have a specific subject heading for consumer participation, so instead the word stems ‘consumer*’ or ‘user*’ where searched in the title or abstract, combined with the subject heading ‘Medical Research’. Again, this search was limited to papers that had an abstract, were written in English and were published from 1995 to the present date.
PsycInfo - for this database, a search based entirely on free-text terms was used as no relevant subject headings were identified. In this case the strategy searched for papers featuring the word stems ‘consumer*’ OR ‘user*’ within one word of the word stems ‘participat*’ OR ‘involv*’ OR ‘inclus*’ in the title or abstract. Again, this search was limited to papers that were written in English, had an abstract and were published from 1995 to the present date.


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