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Patient and Public Involvement How To Guide

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Preparing for Service User Involvement in Research

Initial things to think about:
  1. Finding service users to inform the development of an area of research, making sure that the service users chosen are as close as possible in situation and condition to the people the research is about. Whilst we use the term 'service user' throughout we mean this to include actual service users, their carers, potential users of services and the wider public. For example, consider involving members of communities or groups that you are interested in such as those from a particular ethnic minority or geographic location.
  2. Finding information on paying service users; levels, effect on tax and benefits, how to pay.
  3. Considering building the skills of the service users for your project and to foster future involvement in research.
  4. Considering what will happen to the service users at the end of the project, e.g. other research projects to become involved in, belonging to a service users' group.

Identifying and Prioritising Research Topics

Involving service users at this stage will help to:
  1. Identify topics for research of concern/importance to service users.
  2. Balance professional views in topic selection.
  3. Ensure topics are clearly focused on the needs of patients.
  4. Encourage research that is relevant to practice and more likely to be implemented.
  5. Foster best use of available research monies.
  6. Identify more critical topics amongst other important topics.

Commissioning

Involving service users at this stage will help to:
  1. Inform programmes and calls for research.
  2. Ensure funding is allocated to topics of concern to service users.
  3. Comment on the quality of public involvement in research grant applications.

Design

Involving service users at this stage will help to:
  1. Ensure the right questions are asked in the right way to get meaningful answers.
  2. Ensure methodologies are deemed appropriate by service users e.g. fit for purpose, ethically sound.
  3. Ensure sampling and recruitment approaches for participants are realistic/workable.
  4. Encourage selection of methods that will be received well by participants.
  5. Inform design (content and format) of tools to make them user friendly e.g. questionnaire structure, interview guides, info sheets.
  6. Avoid assumptions about the population being researched e.g. older people don't have sex, drug users don't want help.
  7. Build in opportunities for user input in analysis plans e.g. means of analysis, validation of emerging findings.
  8. Identify meaningful opportunities for service users to be involved in research roles e.g. advisors, reference group, co-researchers.
  9. Ensure mechanisms to support, reward and recognise service users are appropriate and in-built.

Management of Research Projects

Involving service users at this stage will help to:
  1. Build in mechanisms to ensure the service user's voice is present and heard e.g. sufficient numbers of service users, effective meeting Chair.
  2. Ensure structures and processes are inbuilt for appropriate involvement e.g. advisory groups, reference groups.
  3. Challenge and question any aspect of the research conduct e.g. finances, ethical conduct.
  4. Inform project decisions e.g. recruitment of researchers.
  5. Ensure build in effective support mechanisms e.g. venues, payment for carers, communication methods.

Ethics

Involving service users at this stage will help to:
  1. Comply with research governance and ethics approvals requirements e.g. Integrated Research Application System (IRAS).
  2. Ensure study information is user friendly and informative.
  3. Bring a broader perspective about what is ethically acceptable.

Undertaking Research

How service users can be involved in this stage:
  1. To explore potential roles for service users in the undertaking of research e.g. co-researchers, advisors, critical friend, critical readers.
  2. To carry out substantive roles e.g. user led and user controlled research.
  3. To explore intermittent or ongoing involvement opportunities e.g. design only, all stages, step-on step-off.
  4. To identify training needs for both service users and professional researchers.

Analysing and Interpreting

Involving service users at this stage will help to:
  1. Add rigour and insight to analysis.
  2. Validate emerging and final findings.
  3. Identify gaps in the data and questions to fill these.
  4. Inform study recommendations so that they are realistic and meaningful.
  5. Identify topics for future research.

Dissemination

Involving service users at this stage will help to:
  1. Ensure the findings are communicated to all appropriate audiences using appropriate means including presentations to local communities, newsletters, popular press etc. as well as peer reviewed journals, conferences.
  2. Ensure accessibility of outputs e.g. written reports, lay summaries, presentations.
  3. Explore opportunities for involvement in dissemination e.g. presenters, co-presenters, co-authors.

Implementation of Research Findings

Involving service users at this stage will help to:
  1. To increase the likelihood of uptake of research findings.
  2. To add to the validity and resonance of findings.

Monitoring and Evaluation of the Research

Involving service users at this stage will help to:
  1. Ensure the research stays focused e.g. keeping to original objectives.
  2. Monitor use of resources.
  3. Anticipate and troubleshoot problems that arise.
  4. Inform evaluation of the user involvement and build evaluation into the study.
  5. Inform actions based on evaluation findings to strengthen study.