How to record demographic information and why it’s important

The pandemic has shown more than ever the importance of collecting demographic information to help us better draw conclusions about people’s experiences of health and care. Here is why it’s important, how we’re going to support you, and FAQs.
Man standing outside with a Healthwatch lanyard

What is demographic information?

Demographic data refers to information about the characteristics of the population. It allows you to work out who you are talking to.

Protected characteristics are specific aspects of a person’s identity defined by the Equality Act (2010) which protect someone from discrimination.

Download the taxonomy list

Why do we need to collect demographic information?

It’s part and parcel of being an effective Healthwatch. Here’s some examples of how it fits with the Quality Framework and best practice in research:

  • It shows who you are reaching
    Your research and engagement should be representative of the local community. Healthwatch are required by the legislation that set us up to obtain the views of local people in relation to health and social care, and the term local people is defined as being representative of the area.
    This will help you meet the Quality Framework Engagement, Involvement and Reach domain.
  • It helps you with your research and insight
    You’re able to add value to the health and care systems you are seeking to influence with your ability to understand if people’s experiences of health and care differ according to different personal characteristics. It allows you to highlight themes or issues that are relevant to a particular group of people.
    For more information see guidance on engaging with seldom heard groups and the Quality Framework Influence and Impact domain.
  • It can help inform your prioritisation process when selecting potential research projects. 
    For more information see our guidance on starting a research project and the Quality Framework Impact and Influence domain.
  • It can help inform who you might partner with.
    For more information see our guidance on working on research projects with partners, co-production with seldom heard groups and the Quality Framework Collaboration domain.
  • It can help you meet your public sector equality duty, which requires public bodies to have due regard to the need to eliminate discrimination, advance equality of opportunity, and foster good relations between different people when carrying out their duties.
    This will help you meet the Quality Framework Leadership and Decision-Making domain.
  • It may be something that your commissioner is expecting you to do.  Healthwatch England has had a number of conversations with commissioners where they have said that is important for them to understand the experiences of ‘local people’ and how experiences might differ between different groups. This will help you meet the Quality Framework Sustainability and Resilience Domain.

It will also make data recording about demographics consistent across the whole Healthwatch network, helping conclusions to be drawn and escalated on both a regional and national level.

Examples of Healthwatch using demographic data

Healthwatch Stockton on Tees use their data to analyse who they are not reaching. They then use this information to reach out to community groups and invite representatives on to the Board as temporary members.

Healthwatch Hounslow found that they reached very few men through their traditional forms of engagement. To ensure that they got a good response rate to their COVID-19 survey, they contacted their local football club who agreed to publicise it. As a result, they engaged with a much larger proportion of men.

Why is Healthwatch England emphasising this now?

Healthwatch has always been committed to tackling health inequalities, but the past year has demonstrated that we need to redouble our efforts to champion the voices of those who go unheard. The COVID-19 pandemic has shown that some communities have been more affected than others.  Our recently published strategy emphasises the need to reflect and champion the experiences of all communities, and speak up for those who feel they are not always heard.

At the moment we don’t collect sufficient data to analyse feedback by demographics. To fully understand the combined impact of these personal characteristics on people’s experiences of health and social care, and to be able to escalate this on a local, regional and national level, we need to make the data that we collect more consistent.

What demographic information should we be collecting?

The Healthwatch England Research and Insight team have revised the demographic fields currently used in the national reports library and CiviCRM to be more complete, in line with best practice. We have developed a taxonomy based on the nine protected characteristics in the Equality Act 2010.

Find out more

We encourage all Healthwatch to collect this set of demographics in all areas of research, including surveys.  After testing at Healthwatch England, we have found that respondents are generally happy to share this information with us when included at the end of the survey, giving them the opportunity to share their experience of care first. There should always be an option for people not to submit this information should they prefer not to.

Will Healthwatch England be making any immediate changes to the CiviCRM?

Whilst there are plans to make changes to the demographic taxonomy on the CiviCRM, we have decided to revise the timelines to ensure that we understand how we can better support your Healthwatch in obtaining this data first.

We don’t use the CiviCRM to send you data. Do these demographic categories still apply to us?

Yes, we have developed these demographic categories in line with best practice. We encourage you to use them.

It’s important that the Healthwatch network uses the same demographic categories so that the information we collect is consistent, allowing us to draw stronger conclusions about people’s experiences of care across different groups.

What are the plans to support Healthwatch in collecting demographic data?

Through our project to understand the Equality, Diversity and Inclusion (EDI) practices of the network, we have identified a number of areas that your Healthwatch might benefit from additional support to make this possible.

This includes:

  • Staff and volunteers can come up against resistance from the public when asking them about their personal characteristics as there is a lack of understanding both in staff and the public as to why it’s important to collect this information.
  • Overall, age, gender, and disability are perceived as relatively easy to capture.  Some local Healthwatch have found that people in some communities will refuse to complete a survey, or provide feedback, if the question on sexual orientation is included. As a result, this information is rarely gathered.
  • Guidance is needed on whether demographic questions should be asked at the beginning or at the end of each contact/intervention/survey/focus group.

We’re embarking on a project to understand the barriers to collecting demographic data, identify how these can be overcome and to share best practice. Healthwatch Tower Hamlets will be leading this piece of work for us and will be hosting two sessions to help better understand your needs and existing best practice.

  • Click here to register for the webinar on Tuesday 8 June
  • Click here for the webinar on Tuesday 22 June

Following these events, we will have opportunities for Healthwatch staff and volunteers to gain confidence, creating a support plan and materials to help everyone feel more confident in obtaining, recording and analysing demographic data.

Do you have any questions?

For more information on the demographic fields and how to use them, or about any queries or concerns related to the demographic taxonomy, please contact the Healthwatch England Research and Insight Team at research@healthwatch.co.uk, or take a look at our FAQs below.

FAQs

What do I say to people when they ask why we’re asking for information on certain demographics e.g. ‘Why is it relevant that you know what gender I am’?

Healthwatch Tower Hamlets will be leading a couple of workshops in June to gather ideas and best practice from the network about how to gather this information. In the meantime, we’ve put together the following statement for you to use:

“Collecting demographic data enables us to see if there are differences in care provided to people based on their personal characteristics such as gender or ethnicity. It also helps us to understand if there are any gaps in our data, helping us to ensure that the information that we have is as representative of this area as possible.”

Do we have to ask everyone about all of their protected characteristics?

If you can collect all this information that would be fantastic but we appreciate that it’s not always appropriate in every situation to ask about them all.

We’ll use the workshops in June to identify situations when it may be more appropriate to ask people about certain demographics over others.

There are very few people from minority ethnic communities in our area. Why do we have to collect this data?

Even a few cases can make the case for change, it’s important that we understand any factor that could be affecting people’s care. And the COVID-19 pandemic has shown that some minority ethnic groups have been particularly affected. This information also helps us build a national picture, which will be available to see in the central data store that we’re building.

When do we include the demographic questions in our research?

We would encourage you to use the demographic categories in all research projects, particularly surveys. It’s important that the Healthwatch network uses the same demographic categories so that the information we collect is consistent, allowing us to draw stronger conclusions about people’s experiences of care across different groups.

How does GDPR apply to the collection of demographic data?

Some demographic data is covered by the “special category data” provisions of data protection legislation (including health, ethnicity, religion and gender identity).  As this data is particularly sensitive, the law requires you to ask for explicit consent to collect and store this data. You could ask something like, “are you happy for us to store your feedback including information about your ethnicity, gender, disability, religion and health?” You’ll also need to tell people how and where the information is stored and how it will be used.

Our Healthwatch is situated in a very diverse area. Your suggested taxonomy doesn’t help us understand the experiences of particular local communities e.g. Somalis

Our taxonomy has been developed to best address the wide needs of the network, in line with best practice, and to be respectful of people’s identities. Whilst some of the network have resource to break down the categories in more detail, others do not. Where you do have this resource, we would advise that you add additional fields to your taxonomy to help you record this information.

We’re reluctant to ask people for their demographic details as we’ve had experiences in the past where our staff and volunteers are met with abuse as a result. How can we prevent this from happening in the future?

Quite often it can be the case that people don’t understand why we’re collecting that information, and don’t see what particular characteristics have got to do with their experience of health and social care.

We are going to be working with Tower Hamlets to develop a script so that your staff and volunteers can explain this in a way that’s easy to understand although of course if someone does not want to share this information, they don’t have to.

We’re currently working on a survey but feel that the length of the list of demographic categories is too long. Which ones can we drop?

If your survey is online, we would encourage you to include them all.  We’ve found that most people who complete the Healthwatch England webform are happy to provide them all.

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