Frequently asked questions (FAQs)

We are really happy you want to find out more about being involved in health and social care research. You may have questions about this. Here are the answers to some frequently asked questions (FAQs). If you still have questions after reading these please get in touch.

We also have a comprehensive key messages guide which you may also find useful. 

  • helping to decide which problems are most important to answer through research; reading information for patients about a research study and checking it is easy to understand;
  • becoming a public representative on a group running a research study;

  • helping to decide which research studies should be funded.

Some research opportunities may involve commenting on a document by email, or it may be a one-off review of a website. There are also long-term opportunities which can involve you attending regular meetings over the course of a year or years.

You only need to express your interest in the research opportunities which suit your experience, skills, interests and availability.

 

What is public involvement in research?

Public involvement is where members of the public share their time and personal experiences to help decide what research happens and how it happens.

Public involvement is where people are not taking part as participants in the research but are working with researchers to plan, manage and carry out research.

Involvement can take many forms, it can include:

  • helping to decide which problems are most important to answer through research
  • contributing to the writing of patient information sheets 
  • becoming a public contributor on a group running a research study
  • decision making about which research studies should be funded
  • assisting with the sharing of research findings
  • research governance which is a process for ensuring the quality of research, and for protecting the rights, dignity, safety and wellbeing of those involved. This could be research management, or board representation

You can find out more by reading the what is public involvement in research leaflet.

Why should I get involved in research and what benefit does it bring to the research and myself?
  • Benefits to those getting involved include the opportunity to shape research that might affect you, your family or friends 
  • Using your personal experience of a condition, illness or service gives the research study team an understanding of how these experiences affect people in everyday life
  • Contributing your perspective can benefit research by making sure research studies are asking the questions that are more relevant and likely to improve treatment and care 
  • Involvement in research can also be a great way to meet people  It can be a step towards developing useful, new knowledge and skills 
How can I get involved in research?

You can join the public involvement community at Health and Care Research Wales by:

Registering online 

Or by contacting the public involvement and engagement (PI&E) team for support with registering.

What does registering with the public involvement community commit me to?

Once registered you will receive:

  • A weekly bulletin containing information on research involvement opportunities in which you can express an interest and updates from the team.
  • Access to training and guidance about research and public involvement. Examples include the UK Standards for Public Involvement and support from the public involvement and engagement team, who are your main contact for any problems or queries 
  • Payment of expenses and offer of payment for time for some involvement opportunities
  • Access to benefits advice

Public involvement is completely voluntary and there is no obligation to express an interest in any of the opportunities. It’s your choice how involved you are, as it’s important to work around your regular commitments.

Are there different ways for the public to get involved in research?

People can get involved in research in a variety of ways and in different settings, including:

  • helping to decide which problems are most important to answer through research; reading information for patients about a research study and checking it is easy to understand;
  • becoming a public representative on a group running a research study;
  • helping to decide which research studies should be funded.

Some research opportunities may involve commenting on a document by email, or it may be a one-off review of a website. There are also long-term opportunities which can involve you attending regular meetings over the course of a year or years.

You only need to express your interest in the research opportunities which suit your experience, skills, interests and availability.
How do I express an interest in an opportunity?
  • All opportunities are listed on the current opportunities page
  • Each currently available opportunity is listed on the expression of interest form 
  • To express interest, you will be asked to describe in your own words how you match the requirements set out in the opportunity  
  • The researcher leading on the opportunity will review all of the expressions of interest and choose the required number of individuals
  • You will be told if you have been chosen or not and then be contacted by the researcher if successful to discuss next steps
How is public involvement supported in Wales?

All those new to public involvement are directed to an online introduction to public involvement (currently in development)

Health and Care Research Wales Welsh Government Research and Development division set the public involvement in health and social care strategy.

All public involvement in Wales should be aligned to the UK-wide set of standards that guide and shape public involvement and provide the framework for what good public involvement should look like.

A Health and Care Research Wales Support and Delivery Centre public involvement team provide the support and guidance and resources to members of the public and to researchers to make sure public involvement can happens Wales.

The team manage a data base of people, the Public Involvement Community, that any member of the public can register to. The team promote registration by various communication channels to find people and very often seek out people that the opportunity is relevant to via links within the community of Wales / disease or condition support networks or via social media.

The team provide public involvement training, resources and communication channels for the public and researchers. Within the research world there are also many professionals who have a responsibility for the public involvement that takes place in their area of work, for example mental health or in the care home setting or for public health issues that affect young people. There are often groups of members of the public with an interest in these areas of research supported by and working with these professionals.   

The Health and Care Research Wales Support and Delivery Centre public involvement team have an oversight role to ensure support is provided across all public involvement activity.

Will I get paid for being involved?

Taking part in involvement opportunities is a voluntary role and as such you will not get paid wages or a salary for taking part and it should not be considered employment.

Some opportunities may offer a payment for your time and this will be made clear within the opportunity advert. For more information on payment for time please read our expenses and payment for time guide.

Any payment you receive or decide to accept may be considered taxable income. It is your responsibility to ensure that all measures and declarations for your individual circumstances are in place (further advice regarding income generated taxation can be obtained from Her Majesty's Revenue and Customs)

Will any payment affect benefits?

NB due to the coronavirus outbreak contact for the benefits advice service has changed to:

Tel 07377 232240 / e-mail contractsadmin@bedfordcab.org.uk 

If you are concerned that getting involved may affect your benefits then there is free access to the benefits advice service if you are registered with the involvement community. More information on this can be found in our benefits advice flyer (also available in easy read).

Any payment you receive or decide to accept may be considered taxable income. It is your responsibility to ensure that all measures and declarations for your individual circumstances are in place (further advice regarding income generated taxation can be obtained from Her Majesty's Revenue and Customs)

Will it cost me anything to be involved?

It shouldn’t cost you anything to be involved. 

We have a pre-approval process which ensures that any out of pocket costs (expenses) have been agreed before the involvement activity and before any costs are incurred by the individual registered with the involvement community.

Wherever possible, we will book and pay for expenses in advance.

This ensures that the individuals involved are not out of pocket and enables us to obtain good value for money with public funds.

For more information on expenses please read our expenses and payment for time guide. 

What are research opportunities?

These are usually adverts from researchers or research organisations who are looking for members of the public to get involved in a research project or committee

How can I find out about opportunities available?

Adverts are posted on our current opportunities page and in the weekly ‘Your involvement matters’ bulletin.

Involvement opportunities fall into one of 3 categories: blue, green and red. The colours help you know the level of knowledge and experience required, as well as how much time will be needed from the member of public throughout the involvement. We have provided a handy guide on the three categories of involvement to help you understand the different categories.

How can I find out about training available?

We are not currently holding face to face public involvement in research training and we are working to extend the library of e-learning available. An NIHR library of useful public involvement courses can be found here which will eventually include those developed in and for Wales https://learningforinvolvement.org.uk/