Q. What is the study about?

The DACHA study aims to develop a minimum data set for older people living in care homes. A minimum data set (MDS) is a standardised way of collecting important information about care home residents. This part of the DACHA study builds on the work undertaken in the first two years, where we are testing the collection of the MDS data in participating homes at two time points, six months apart. We want to find out:

1. Can we collect some data directly from care homes and then match this to data already being collected about residents in health and social care?
2. What is the quality of the data we collect?
3. How can the data be used to provide better, joined up health and social care for residents?
4. What do we need to consider to enable wider roll out of a minimum data set for care homes in England?

Q. Why have I been contacted?

The care home where your relative/friend resides has agreed to participate in a research study. Your friend/relative has been identified as someone who might not be able to consent for themselves to take part in the study, so we are asking you for advice about how they would feel about being involved.

Q. Why are you including people who do not have the capacity to consent for themselves?

The Department of Health and Social Care (DHSC) and NHS England and Improvement (NHSEI) are working to create a single care record for health and social care. They also want all care providers, including care homes, to collect the same information in the form of a minimum data set. The NHS already collects a lot of data about people, as do care homes. Given that many people living in care homes lack capacity to consent, it is important to include these residents in the study. If we exclude them, their experiences and outcomes will not feed into the recommendations we make to policy makers about the use and implementation of a minimum data set. To ensure our recommendations truly represent care home residents in England, our research must also be representative.

We will collect data in this research study in a way that protects the anonymity of the care home residents. We are going to pseudonymise the data to ensure personal data can no longer be attributed to a specific individual. The data extraction process will be handled by our research partner, The Health Foundation.

Stages of care home resident data flow

Q. Will taking part change any care that my friend/relative receives?

No, participation will not involve any change to your friend’s/relative’s care. The only difference will be that a small number of additional measures that were not previously collected will be added to their care records. These measures include information about residents’ quality of life, cognition, delirium, and activities of daily living. These are being included following extensive research and consultation. Quality of life is being added as we believe that it is a particularly important aspect of resident care that is not measured in a systematic way.

Q. Are there any benefits to my friend/relative taking part?

While there are no immediate benefits, participation in this study and the subsequent development of a MDS could help care home staff better understand the impact of day-to-day decisions on residents. It could also help the NHS to work better with care homes when providing healthcare. Potentially, an MDS could have helped prevent the uncertainty amongst policymakers about how to respond to COVID-19 in care homes during the first wave.

Q. What do I have to do?

Please read over the information sheet that has been sent to you via email/post and decide whether you think your friend or relative would want to take part in the study if they were able to decide for themselves. You might want to speak with them about it or think about how they felt about research in the past. Once you have completed and submitted the personal consultee declaration form (either by post or online), you do not need to do anything else, we will work with the care home to extract the data.

Q. What will happen if I do not want the person to carry on with the study after I have agreed for them to take part?

If you decide that you would like your friend/relative to withdraw from the study, we will keep and continue to use all of their previously collected data. However, we will not collect any further data about them. This will not affect their care in any way. You can withdraw them by contacting the research team members as listed below for each region:

Nottingham and Nottinghamshire:

Rachael Carroll on Rachael.carroll@nottingham.ac.uk

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Surrey:

Lucy Webster on L.Webster@Kent.ac.uk  or 01227 82 3156

OR Sinead Palmer on s.e.r.palmer@kent.ac.uk  or 01227 823863

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North East and North Cumbria:

Ian Spencer on Ian.spencer@newcastle.ac.uk