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Public Involvement How-to Guide

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Preparing for public contributor involvement in research

Initial things to think about:
  1. Finding public contributors to inform the development of an area of research and making sure that the public contributors chosen are as close as possible in situation and condition to the people the research is about. Whilst we use the term 'public contributor' throughout, we mean this to include actual patients, service users, 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 group or geographic location.
  2. Finding information on paying public contributors; levels, effect on tax and benefits, how to pay.
  3. Considering skills and experiences you need your public contributors to have and what skills you can build on once part of the team to support their involvement in research.
  4. Considering what will happen to public contributors at the end of the project, e.g. other research projects to become involved in, belonging to a public contributors' group.

Tasks/topics public/academic teams may want:

Writing a simple person specification and role description can help the team to consider any specific health or life experiences, attributes or knowledge that a project may need a public contributor to have, also the key research areas they may contribute to.

Consider equality and diversity, health inequalities when thinking about any requirements and who you're targeting, this will help you plan how best to reach potential public contributors and things that may be useful to put in place to support them to take part.

Identifying and Prioritising Research Topics

Involving public contributors at this stage will help to:
  1. Identify topics for research of concern/importance to patients, service users, carers and relatives.
  2. Balance professional views in topic selection.
  3. Ensure topics are clearly focused on the needs of patients and service users.
  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.

Tasks/topics public/academic teams may want:

Be clear about what elements public contributors can contribute to and to what extent they can influence. In multi-stakeholder meetings, discussing and ranking priorities can help identify the different perspectives/challenges for all members and highlight areas for further discussion. It also gives everyone the same role in the meeting, whether professional or public member. Think about sharing responsibility, could public contributors take the role of co-chair or co-minute taker?

Commissioning

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

Tasks/topics public/academic teams may want:

Research teams may wish to involve a public co-applicant on research applications. Public contributor Co-applicants should be involved from an early stage and have the opportunity to substantially contribute to discussions and planning of the research.

Design

Involving public contributors 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 public contributors 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 public contributor input in analysis plans e.g. means of analysis, validation of emerging findings.
  8. Identify meaningful opportunities for public contributors to be involved in research roles e.g. advisors, reference group, co-researchers.
  9. Ensure mechanisms to support, reward and recognise public contributors are appropriate and in-built.

Tasks/topics public/academic teams may want:

Once a public contributor is in place, you can revise the role description together to incorporate the public contributors specific experience, interests and skills. Working through the research plan together, it may highlight opportunities for their involvement at stages you hadn't thought about.

Management of Research Projects

Involving public contributors at this stage will help to:
  1. Build in mechanisms to ensure the user voice is present and heard e.g. sufficient numbers of public contributors, effective meeting Chair.
  2. Anticipate and identify strategies to mitigate power imbalances when public contributors join research teams for advisory/steering meetings and other elements of study management.
  3. Consider what training might be relevant and needed for public contributors.
  4. Ensure structures and processes are inbuilt for appropriate involvement e.g. advisory groups, reference groups.
  5. Challenge and question any aspect of the research conduct e.g. finances, ethical conduct.
  6. Inform project decisions e.g. recruitment of researchers.
  7. Ensure build in effective support mechanisms e.g. venues, payment for carers, communication methods.

Tasks/topics public/academic teams may want:

Work with your public contributor to map out the information flow within and governance of a project. This should help identify information that the public contributor may need access to and tasks which they could play an active role in.

Ethics

Involving public contributors 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 public contributors can be involved in this stage:
  1. To explore potential roles for public contributors 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 public contributors and professional researchers.

Tasks/topics public/academic teams may want:

Meet to map public contributor skills to help identify what skills they'd like to develop and where the team may need to provide training. It can be useful to map training needs of other team members too in terms of public involvement.

Analysing and Interpreting

Involving public contributors 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 public contributors 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, blogs 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.

Tasks/topics public/academic teams may want:

Public contributors may be well placed to advise on the most suitable communication methods and routes to reach certain groups. Involve public contributors in planning communications and dissemination.

Implementation of Research Findings

Involving public contributors at this stage will help to:
  1. Increase the likelihood of uptake of research findings.
  2. Add to the validity and resonance of findings.
  3. May identify networks/contacts for implementation opportunities.

Monitoring and Evaluation of the Research

Involving public contributors 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 public involvement and build evaluation into the study.
  5. Inform actions based on evaluation findings to strengthen study.