Questions from the joint NIHR School for Social Care Research/INVOLVE webinar – September 2013

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Question: Do I need ethical approval to involve members of the public in developing the funding application?

Answer: If you are applying for ethical approval through the National Research Ethics Service (NRES) joint guidance has been developed by INVOLVE and NRES. The guidance clarifies that members of the public actively involved in research are acting as specialist advisors, providing valuable knowledge and expertise based on their experience of a health condition or public health concern. Therefore ethical approval is not needed for the active involvement element of the research (even when people are recruited via the NHS), where people are involved in planning or advising on research, for example helping to develop a protocol, questionnaire or information sheet, being a member of an advisory group or co-applicant. Further information is available. 

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Question: Are there examples of job/role descriptions for the service users?

Answer: The INVOLVE website has a selection of job and role descriptions

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Question: What support is available to help researchers involve people early in the development of research proposals before they are submitted to funders?

Answer:  There are NIHR Research Design Services (RDS) in each geographical across England.  They are able to provide advice on all aspects of preparing your funding application including public involvement. Each RDS supports public involvement funding applications in different ways, such as by supporting you to find people to work with you on your application or having a group or panel that will review your application. Some RDS have a small grant that you can apply for to fund public involvement at this early stage so you can hold a meeting, provide refreshments and reimburse travel and expenses.

INVOLVE has information on public involvement in all stages of the research process in its Briefing notes for researchers 

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Question: Is any work being done to help universities and other research institutions to develop more user friendly systems and governance practices around payment, particularly of out of pocket expenses?

Answer:  Payment systems are usually set up to make sure that they adhere to various regulations, especially with regard to HM Revenue and Customs. In practice, this means systems are not always as user friendly and flexible as they are required to be to meet the range of different needs for service users getting involved. A common problem is the delay in receiving payments or reimbursement of expenses.

A few university finance managers are considering how and if systems can be re-designed to place the service user at the centre and remain within the necessary regulations.

Practical solutions currently being used within universities are:

  • booking train fares and accommodation in advance using the university booking system
  • arranging for a petty cash allowance to pay for small travel costs and expenses
  • setting up an account with a local taxi company which will invoice the cost of fares.

We have asked several universities if they can share any work they are doing on this so we will update this response if we get further information.

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Question: I am a PhD student interested in PPI. I recently organised a PPI seminar for PhD students at my university. While organising this, I was surprised to find that many experienced researchers confuse involvement with engagement, which I’ve always regarded as two very distinct things, as you mentioned. Do you come across this yourself?

Answer: There is sometimes confusion between the terms involvement and engagement and there is also not always a common understanding of what these different terms mean. This was discussed a recent INVOLVE advisory group meeting so it is something that others have also come across. It is important to be clear what we mean by the different activities but also to recognise that each is important in its own right and that the two activities can complement each other. We have outlined below what INVOLVE means when it uses the terms involvement and engagement but there is further information in Briefing note two of our briefing notes for researchers

Involvement – where members of the public are actively involved in research projects and in research organisations.

Examples of public involvement are:

  •  as joint grant holders or co-applicants on a research project
  •  involvement in identifying research priorities
  •  as members of a project advisory or steering group
  •  commenting and developing patient information leaflets or other research materials
  •  undertaking interviews with research participant
  •  user and/or carer researchers carrying out the research.

Engagement – where information and knowledge about research is provided and disseminated.

Examples of engagement are:

  • science festivals open to the public with debates and discussions on research
  • open day at a research centre where members of the public are invited to find out about research
  • raising awareness of research through media such as television programmes, newspapers and social media
  • dissemination to research participants, colleagues or members of the public on the findings of a study.

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Question: What guidance and examples are available around safeguarding and managing risk when service users are acting as peer interviewers, particularly where they may need to visit research participants in their own homes?

Answer: All researchers need to be safeguarded when they are interviewing people particularly when going into people’s homes.  Alison Faulkner addresses some of these issues for service users in her publication The ethics of survivor research: Guidelines for the ethical conduct of research carried out by mental health service users and survivors, which can be downloaded from the Joseph Rowntree Foundation website.

An example of how one project addressed this by working in pairs and having named contacts, clear supervision and debriefing is discussed in this article: “Learning the lessons together” Mental Health Today, February 2008.

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Question: Do you know if there are similar bodies/organisations in Scotland that support researchers in social care as NIHR and INVOLVE do?

Answer:  There are organisations actively involving members of the public in research in Scotland. The following organisations might be of interest:

Chief Scientist Office

Scottish Health Council

Scottish Cancer Research Network

Scottish Children’s Research Network  

Scottish Dementia Clinical Research Network 

Scottish Diabetes Research Network

Scottish Mental Health Research Network 

Scottish Stroke Research Network