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 invited to take part?

We have invited you to be part of the DACHA study as you meet the eligibility criteria of being a care home located within one of our participating Integrated Care Systems (ICSs), registered for the care of adults aged 65+, and using PCS or Nourish as your digital care planning software.

Q. What would I need to do?

The researchers would meet with you (either online or in person) to talk about the study in more detail and ask you to sign a consent form to agree to the home taking part. A data sharing agreement will also be signed, although it may be someone else in your organisation who is responsible for this if your home is part of a chain.

The researchers will then be responsible for inviting your residents to take part and collect consent, although for residents who do not have capacity to consent to research, we would ask you to contact their representative (i.e., a friend or family member) on our behalf. We will provide all the information you need to send (plus stamps if you prefer this to be sent by post instead of email).

For the residents who participate, we will ask the home to work with the software vendor to send the relevant data from the digital care records to the research team. Both the software vendors and researchers will provide support with this. For those residents who have opted-in for their data to be matched, the research team will then match data from the care home records of these residents with other routinely collected health and social care data about them. This will happen in a way that protects their anonymity. 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.

Before data extraction takes place, you will be asked to complete some additional measures. More information about this is below. There will also be an opportunity for a member of your team to participate in an interview or focus group after each data collection.  This is an opportunity to share experiences and thoughts about piloting the MDS.

Stages of care home resident data flow

Q. What data are you collecting as part of the minimum data set?

Most of the resident data we need is already routinely collected in your digital care record software. This includes:

• Demographics – Resident Characteristics
• Palliative Care Needs
• Care Home Stay
• Resident Needs
• Complications / Adverse Events
• Diagnoses
• Medication and Vaccination
• Health Care Utilisation

We also want to collect a small number of additional measures, which we hope you will find useful. These will be added to your digital care record software:

• Quality of life
• Cognition
• Delirium
• Activities of daily living

There will be four quality of life measures/questionnaires including: ASCOT, ICECAP-O, EQ-5D-5L, and QUALIDEM.  Filling in these measures do not take much time to complete; each measure should take around 2-3 minutes on average. The reason for including more than one is to clarify which one(s) will be the most useful going forward. You will be able to provide feedback during the interview/focus group that will follow the data extractions.

Q. My home already submits a lot of data to various bodies, including the NHS Capacity Tracker. How does this fit in with other data collections?

One of the aims of DACHA is to try to minimise the duplication of reporting to different bodies, by bringing all this information together. The DACHA study will also help the Department of Health and Social Care (DHSC) in its work on care home data and digital social care records. As our study is a pilot, it will not reduce your data collection burden at this stage. The prototype MDS could potentially inform commissioning, and in future, this might reduce the burden on care homes regarding data collection. The subsequent development of an MDS could also help care home staff better understand the impact of day-to-day decisions on residents.

Q. Why should my home take part?

An MDS linked to digital care records would help care home staff better understand the needs of residents, reduce duplication of reporting (which currently takes up a lot of time and resources) and help the NHS to work better with care homes when providing healthcare.

Participating care homes will have an opportunity to influence what is and is not included in the Department of Health and Social Care’s minimum data set, as the results from the study will feed into this as well as national policy decisions around digital care records.

The Care Quality Commission (CQC), the regulator of care homes in England, encourages care homes to participate in research and look favourably on it when it is evidenced at inspection. They are aware and supportive of the DACHA study. The study is also supported by several prominent organisations, including The Health Foundation, Care England, Registered Nursing Home Association, and the National Care Forum.

Care homes will receive £100 after each wave of data extraction as a thank you.