Public involvement is an essential part of any research project. Be clear about what it entails and why it needs proper planning.
The CSP's approach to public involvement in research is to promote working partnerships with stakeholders including members of the public. These stakeholders may be patients, potential patients, carers and people who use health and social care services, as well as people from organisations that represent service users.
In research, there are three different approaches to public involvement:
- consultation: members of the public are asked for their views and opinions to inform decision making
- collaboration: an ongoing partnership between researchers and members of the public where research decisions are shared
- user controlled: the research is actively controlled, directed and managed by service users and relevant organisations
In practice, research projects will often use a combination of these approaches and as such, may occur at different stages of the project cycle. Please see the INVOLVE website for further information on the nature of public involvement: www.invo.org.uk
Why is public involvement important?
Public involvement is an essential part of any research project. For example, someone who has experience of using a service or living with a health condition can provide an invaluable perspective on a research topic.
People-focused research in the NHS simply cannot be delivered without the involvement of the public
Professor Dame Sally Davies, chief medical officer
They can help improve the research process by making research information more relevant and accessible to them.
Public involvement can also help with the ethical review of a research project design and with funding applications. Most research funding bodies will expect public involvement in research projects, or otherwise clear justification for not doing so.
It's important to demonstrate in funding applications that the needs and experiences of stakeholders have been incorporated into the project design. Research ethics committees routinely ask about plans for public involvement in research as part of their assessment process.
How to plan for public involvement
It helps to involve the public as early as possible in research project planning. Some areas to consider include:
Policies and procedures
Make sure you have clear policies and procedures for the people who you are inviting to be involved. These may also be needed by your research team and other relevant departments in your organisation such as finance and human resources. For more information on this, see National Institute for Health Research guidance on good clinical practice. You will also need to develop a job or role description giving details of exactly what is involved.
Other procedures to organise could include: payment and expenses policies; travel and expenses claim forms; methods for payment; confidentiality agreements; health and safety guidance; honorary contracts; insurance, and Disclosure and Barring Service (formerly CRB) checks.
Involving the public has cost implications and also requires additional time. Make sure you include realistic costs for this in your budget. Research funders will expect to see adequate costing for patient and public involvement in project proposals. Costs to consider include: travel and subsistence expenses; childcare and carer costs; payment for time and work undertaken, and training and support.
Training and support
Members of the public involved in your research project may need additional training and support before starting, as could members of your research team. Training might involve attending formal sessions or courses, 'on the job' training, or the sharing of knowledge and experiences with colleagues and peers.
Finding people to involve
First consider what knowledge and perspectives you are seeking through patient and public involvement. Individuals cannot represent everyone and it may be better to think in terms of looking for different perspectives rather than people who are representative. Consider whether you need the perspective from people who have experience of a specific condition, service or treatment, or a more general perspective from a member of the public. The number of people to involve will depend on how many different viewpoints you need.
Once you have decided who you want to involve, there are a variety of ways of making contact. For example, networking with patients or community members, advertising in physiotherapy departments or GP surgeries, local newspapers or radio, local or national patient support groups and voluntary organisations, social media and use of relevant websites such as People in Research.
Evaluating public involvement
You will need to document patient and public involvement for the duration of your project and evaluate its impact once finished - so make sure to plan for it from the start. Demonstrating research impact is essential and research funders will ask you to report on it. See the Economic and Social Research Council's website for a number of resources for recording and evaluating impact.
INVOLVE is a national advisory group that supports greater public involvement in NHS, public health and social care research. Their website has an extensive range of resources on public involvement. See their website for more details: www.invo.org.uk
People in Research has resources to help members of the public find opportunities to get involved in research and for researcher organisations/researchers to advertise their own involvement opportunities. See their website for more details: www.peopleinresearch.org
The National Institute for Health Research (NIHR) funds health and care research and provides an infrastructure for high-quality clinical research within the NHS. Their website contains publications on public involvement and useful information on why and how to get involved in the NIHR Clinical Research Network. See their website for more details: www.nihr.ac.uk
Research Design Service: The NIHR funds the Research Design Service (RDS) to provide design and methodological support to health and social care researchers across England making grant applications to the NIHR and other national funding programmes. Regional RDS advisers offer help in improving research applications and can advise on public involvement. The service is confidential and free of charge. See their website for more details: www.rds.nihr.ac.uk
Research Councils UK: RCUK believe that 'engaging the public with research helps empower people, broadens attitudes and ensures that the work of universities and research institutes is relevant to society and wider social concerns'. See their website for a wide range of relevant resources: www.rcuk.ac.uk