Frequently asked questions

INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example:

• working with research funders to prioritise research;
• offering advice as members of a project steering group;
• commenting on and developing research materials;
• undertaking interviews with research participants.

When using the term ‘public’ we include:

• patients;
• potential patients;
• carers and
• people who use health and social care services as well as people from organisations that represent people who use services.

Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services. For more information go to www.involve.nihr.ac.uk/find-out-more/what-is-public-involvement-in-research-2. The NIHR Research Design Service (RDS) (www.rds.nihr.ac.uk/) supports researchers to develop and design high quality research proposals for submission to NIHR and other national, peer-reviewed funding competitions for applied health or social care research.

INVOLVE publicly advertises for members for its advisory group every few years. We last recruited in 2012 and normally recruit every two to three years.  We currently have 12 advisory group members. How are INVOLVE advisory group members recruited? New members are recruited through public advertisements and interviews. Advisory group members are invited to join the INVOLVE Group on the basis of their ability to provide personal and/or professional expertise that will be valuable in moving INVOLVE’s work forward. Main Group members are appointed by the Director of Research and Development, Department of Health, England, often following a recommendation from the Chair of INVOLVE. If you have any questions about membership, please contact INVOLVE at involve@nihr.ac.uk or call us on 02380 595628.

Over 4,000 people have signed up to receive the quarterly INVOLVE newsletter by email.  Most are from the United Kingdom but we send it worldwide to people in Australia, USA and many parts of Europe. You can also sign up to receive regular email alerts highlighting news items on our website. Follow us on twitter @NIHRINVOLVE and find out the latest on public involvement in research. Visit Current work on our website to find out what we are working on at the moment and to read our Work Plan 2013-16 and Strategy 2012-2015.

Several organisations are actively involving children and young people in research and have information and resources on their websites:

The National Institute of Health Research (NIHR) Medicines for Children Research Network (MCRN) www.mcrn.org.uk/children/design

National Children’s Bureau Research Centre (NCB). Includes information on a 2011 conference on young people’s involvement in research and projects involving children and young people: www.ncb.org.uk/policy-evidence/research-centre/involving-young-people-in-research including:

• Guidelines on research with children and young people: www.participationworks.org.uk/resources/guidelines-for-research-with-children-and-young-people
• The Pear Project – a (now completed) project involving young people in public health research, including a conference and guidance for researchers: www.ncb.org.uk/pear
• Viper young researchers – a project involving young disabled people in research: www.councilfordisabledchildren.org.uk/what-we-do/work-themes/participation/viper/young-researchers

Participation Works. Information on children and young people’s participation including downloadable versions of NCB and PEAR guidelines, ‘how to’ guides including ‘creative methods’ and ‘reward and recognition’, and a guide and toolkit for evaluating participation with children and young people: www.participationworks.org.uk

Children’s Research Centre. Supports child-led research: http://childrens-research-centre.open.ac.uk

Young Researcher Network. Includes toolkit to support young people-led research www.nya.org.uk/integrated-youth-support-services/young-researcher-network

Children’s Rights Alliance for England: www.crae.org.uk

INVOLVE has published: A guide to involving children and young people in research

Visit our Putting it into Practice library and search for children and young people to find out what others have written.

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. For further information please view guidance developed by INVOLVE and the National Research Ethics Service.

Consider how best to reach people with the different perspectives you need. You could:

• advertise in GP surgeries, outpatients or local newspapers
• talk to local or national patient support groups
• search online for relevant organisations
• ask community members or patients how best to find people who might be interested in getting involved
• talk to other health and social care professionals such as community development workers, social workers, health visitors, GP practice managers
• contact the Patient Advisory Liaison Officer based at your local NHS Trust
• put details of your opportunity for people to get involved on the People in Research website so interested members of the public can make contact with you.

Allow plenty of time to make contact with organisations and individuals as finding people nearly always takes longer than you think.

 

INVOLVE recommend that as a minimum all out of pocket expenses should be covered for members of the public.  We do not recommend particular payment rates for involvement in research. This is because the rate offered will need to suit the individual circumstances of the involvement. In the main, this depends on two things:

• The nature of the task asked of members of the public - how complex is it and what level of skill, expertise and advance preparation is required? For example, the rate offered for taking part in a one-off consultation event might differ from the rate offered for membership of an on-going research panel with complex papers to review and comment on prior to each meeting.
• The amount of funding available to support involvement – different organisations will have access to different funding amounts to support involvement. We do not want organisations to feel inhibited from doing involvement if they do not have the same level of funding, and therefore cannot offer the same rates, as other organisations.

Rates are sometimes set by a host organisation for the research (for example, the university or NHS Trust). You should check whether the organisation you are working with has a policy for payments and expenses for involvement. In Payment for Involvement, we have listed some examples of rates offered by different organisations and for a range of involvement activities (see page 23-5). These may help you decide which rate to offer appropriate to the involvement in your research.  This publication also includes practical information on things you need to consider when making payments and covering expenses.

I need to put an organisation down on the participant information sheet before I submit for ethical approval. Can I nominate INVOLVE to be an independent contact on a study for potential study participants to contact about taking part in the study?

INVOLVE does not fulfil this role because our focus is on supporting and encouraging active involvement in NHS, social care and public health research - this is where patients and the public get actively involved in influencing what research is done and how it is carried out, for example through project steering groups or membership of research panels. This role is very different from being a participant in, say, a clinical trial. Therefore it would not be appropriate for us to offer to be the point for contact for participants in a study. We suggest that you speak with your local Research and Development office in the organisation where your research is taking place. They will have dealt with this query for other researchers and research teams. Sometimes the Patient Liaison and Advice Services (PALS) in NHS Trusts are willing to undertake this role.

A plain English summary is a brief summary that has been written for members of the public and an interested audience rather than specialists.  It should be written clearly and simply, without jargon and with an explanation of any technical terms that have to be included. Guidance on writing plain English summaries can be found here: www.involve.nihr.ac.uk/resource-centre/plain-english-summaries/

The INVOLVE jargon buster, or glossary of words contains the definitions of some of the terms commonly used in public involvement in research. It is not a complete list of all the words you might come across. The definitions were developed for INVOLVE by TwoCan Associates working in consultation with a panel of researchers and a panel of people who use services. It can be  found here: www.involve.nihr.ac.uk/resource-centre/useful-information/jargon-buster

The National Institute of Health Research (NIHR) Research Design Service supports researchers to develop and design high quality research proposals for submission to the NIHR and other national, peer-reviewed funding competitions for applied health or social care research. This support is provided free of charge. You can find your local RDS here: http://www.rds.nihr.ac.uk/ Information about funding for PPI at the research design stage can be found here: www.rds.nihr.ac.uk/ppi/funding-award.

The Mental Health Research Network and INVOLVE have developed a useful guide (budgeting for Involvement) that provides practical advice on how to budget for involving patients, carers and the public in research. You can use the cost calculator to work out the costs of involvement at any stage of the research process – whether that’s a planned focus group in a study underway or putting together an entire budget for a study. It may be particularly helpful when designing research studies and applying for funding. Please see the following link: www.involve.nihr.ac.uk/resource-centre/payment-and-recognition-for-public-involvement/involvement-cost-calculator.

As a start you should contact your local Research Design Service funded by the National Institute for Health Research: http://www.rds.nihr.ac.uk/support-options/regional-centres/ 

As a start you should contact your local Research Design Service funded by the National Institute for Health Research: http://www.rds.nihr.ac.uk/support-options/regional-centres/

INVOLVE has information on being involved here:www.invo.org.uk/find-out-more/getting-involved   People in Research also has information for members of the public who would like to be involved in research including a database of current opportunities. Please see the following link: www.peopleinresearch.org.

Here are a selection of some of the resources that might be helpful : The voluntary sector shared learning group has a website: Voluntary sector shared learning group: facilitator is Bec Hanley: bec@twocanassociates.co.uk  http://www.user-involvement.org.uk/   Guidance documents and articles : The Ethics of survivor research – Alison Faulkner https://www.jrf.org.uk/report/ethics-survivor-research-guidelines-ethical-conduct-research-carried-out-mental-health   A series of case studies of public involvement in mental health research: http://www.invo.org.uk/resource-centre/library-resource/?id=648&section=invonet   MIND project: http://www.mind.org.uk/media/418956/Peer-Support-Executive-Summary-Peerfest-2013.pdf   Peer worker Research project – St Georges hospital: http://www.peerworker.sgul.ac.uk/the-team/wider-research-team#   Beyond our Expectations A report of the experiences of involving service users in forensic mental health research: http://www.invo.org.uk/resource-centre/library-resource/?id=550&section=invonet

All of our publications are available to download from this website.   We can send out small numbers in the post free of charge with at least 2 weeks notice.   To request hard copies please email involve@nihr.ac.uk or telephone 02380 595628

The following page contains stories, examples and evidence that are specific to the NIHR Clinical Research Network (NIHR CRN) that show the involvement of patients, carers and the public is making the difference in research. Please go to: www.crncc.nihr.ac.uk/ppi and see the 'case studies' box at the top right-hand side. INVOLVE also has information about the developing evidence base on the impact of public involvement in research. Please go to: www.invo.org.uk/resource-centre/examples.

The next conference will be in 2019 and details will be on the news section and conference page on our website. To help in the assessment of potential costs, the previous conference’s delegate rates (for 2017) were:

• Commercial - £300
• Not for profit organisations -  £175
• Community (including service user) - £100

Although this is a non-profit-making conference, it would be reasonable to increase these slightly for costing purposes. For travel, it would be reasonable to assume a central England location, such as Birmingham or Nottingham, although obviously this may change. Accommodation costs usually range from £75 to £120 per night – and again this may change over time, especially if a different venue is selected. Bursaries are available for members of the public who are not attached to an organisation. Details will be available nearer the time.