HRA Community demographic report

Executive summary

The Health Research Authority’s (HRA) vision is for high quality health and social care research today that improve everyone’s health and wellbeing tomorrow. Our strategy sets out a guiding principle to include, so that health and social care research is done with and for everyone. Key to this is ensuring that the HRA makes better decisions by working with a diverse group of people and making sure that everyone who wants to can get involved.

To help us understand if we are listening to and involving a diverse group of people in our work, better reflecting the society that we serve, we need to understand the diversity of members of our Research Ethics Committees, Confidentiality Advisory Group, and members of the public who inform and influence our work through public involvement activities – our HRA Community members.

This is why, at the end of 2023, we asked our community members to complete a diversity and inclusion survey, so that we can build a picture of our current community. Through the survey, we wanted to understand who might not be part of our community so that we can take action to understand why and make changes so that they can join us in future. We wanted this survey to give us a baseline against which we can see if the actions we take make a difference.

We are pleased to see from this survey that many of our members are engaged with the HRA, evidenced by a 67% response rate in the 2023 survey.

We found that that our membership has more women at 58%. We also have an older demographic, with 60% of our members aged 60+, with members in their 20s or younger underrepresented. Most of our members described themselves as being White (84%), with Black/African/Caribbean/Black British people slightly underrepresented.

About the survey

In designing the survey, we needed to make decisions over what information would be helpful and appropriate to gather, provide options that reflected everyone and ensure that it was easy to answer. We started out with a version based on the Diversity and Inclusion Survey (DAISY) Question Guidance (Version 2) which was developed by EDIS (Equality, Diversity and Inclusion in Science and Health) and the Wellcome Trust.

We also looked at census questions used by the Office of National Statistics. We compared these with questions asked by organisations such as the National Institute for Health and Care Research and the Academy of Medical Sciences. We also discussed the questions with members of our Community Insight Group and People Centred Clinical Research steering group.

Using all this information, we finalised the choice and phrasing of questions. We intend to use this question set going forward whenever we collect demographic information from our community members and people who attend our meetings and events.

We sent the survey to 904 people, and 611 completed it. This represents a 67% response rate.

• For context, the 611 responses were drawn from the groups as follows:

Three respondents answered the survey twice, indicating that they were part of more than one of our member groups.

Data

This survey asked our members about themselves in the following demographic categories:

• age
• disability
• ethnicity
• gender and gender identity
• religion or belief
• sexual orientation
• carer status
• employment status
• location

The survey responses represent a significant proportion (67%) of our membership, which has allowed us to extrapolate and draw conclusions for the whole HRA Community.

Our members’ data is presented alongside comparable Census 2021 data from the Office of National Statistics (ONS) where this is available for the population.

Where 10 or fewer people selected a survey option, we have redacted this to ensure our members are not identifiable.

Age

The HRA Community is an older population, which is out of proportion with the English and Welsh population. While 60% of our members are aged 60+, we have no members under the age of 20, and few aged 20-29.

Disability

Around 9% of our members consider themselves to be disabled, which is lower than the English and Welsh population. However, about 32% reported having a chronic health condition, and 7% considered themselves neurodivergent e.g. being dyslexic, dyspraxic, autistic, or having attention deficit hyperactivity disorder (ADHD). This tells us that a substantial proportion of our community may benefit from accessibility considerations, whether or not they see themselves as disabled.

Disability

Chronic health condition

Neurodivergence

Ethnicity

The majority of our members (84%) described themselves as being White, which is very similar to the English and Welsh population. Black/African/Caribbean/Black British people are slightly underrepresented within our member groups, while all other ethnicities are broadly in line with the English and Welsh population.

Gender

HRA membership has a higher proportion of women (58%). The majority of our members (99%) reported that their gender identity was the same as their sex as recorded at birth, which is slightly higher than the English and Welsh population based on the census (94%).

While some people selected ‘prefer not to say’, nobody told us that their gender identity was different from their sex as recorded at birth

Religion or belief

A significant proportion of our membership are Christian (40%) or have no religion (35%). This is broadly in line with the English and Welsh population. However, Jewish and Muslim people are underrepresented within our membership.

Sexual orientation

The majority of HRA membership (85%) identifies as heterosexual, which is slightly lower than the English and Welsh population. A notably higher proportion of our membership (10%) identified as being LGB+ when compared with the English and Welsh population (3%).

Carer status

Most of our members reported having no carer responsibilities (70%). Those who did report caring responsibilities were predominantly carers of a child or children (12%) with only small proportions caring for older people (6%), adults (2%) or disabled adults (2%).

Employment

Nearly half of our members are employed either full or part-time (46%). A similar proportion (44%) are retired, which is not unexpected given that 60% of our members are aged 60+.

Location

Most of our members said they live in England (95%), with most in South East England (19%) and Greater London (17%). About 3% of our members said they live in Scotland. The number of members living in Wales or Northern Ireland are too low to disaggregate.