Collecting data on income, assets and care needs to inform policy decisions on paying for social care

A few days ago DHSC published the findings from a two-year feasibility study looking at how to collect robust data on the income and assets of adults with care needs in England, which Ipsos conducted jointly with the Care Policy Evaluation Centre at LSE. This is data that DHSC, under the previous administration, wanted to collect to inform policy decisions on people’s ability to pay for their care needs. 

A number of different public sector organisations hold data about people’s income and assets, for tax and benefit purposes – for example, the Department for Work and Pensions, and His Majesty's Revenue and Customs. Adults with care and support needs who receive local authority funded care, will also have had a thorough financial assessment, as well as a care needs assessment, with data held by their local authority. Some existing surveys such as ELSA and the UKHLS, also collect information about people’s income and care needs. However, none of these sources would, on its own, provide the data DHSC needs to understand ability to pay for care, which is dependent on an individuals levels of income and assets. Deriving robust data on care needs, income and assets from existing sources would require accessing and linking a large number of data sources, which are held by different organisations. Strict data protection legislation and policies mean existing data cannot easily be shared and linked.

To inform policy decisions, DHSC wanted to explore whether it would be feasible and acceptable to collect the necessary data in a different way, such as through a survey of people with care and support needs. We found that people would be willing to provide some, but not all the data DHSC was after, for a range of reasons.

Indeed, asking people to provide information about their income and assets as part of a survey is not straightforward, even when the survey is conducted on behalf of a government department, with the aim to inform national policy, and with clear explanations of the confidentiality and anonymity of people’s answers and of the purpose of the survey. In the feasibility study we conducted jointly with the Care Policy Evaluation Centre at LSE, we explored how people with care needs and unpaid carers would feel about taking part in a survey asking about the income, assets and care needs of a person with care needs.

We found that people with care needs and their unpaid carers were frustrated to have to provide the same information multiple times. As such, they were willing to see information about their care needs shared across some organisations, as long as this was done securely.  

I've had to repeat [the process of explaining my care needs] probably 50 times with different doctors and hospitals over the years. I know that the data is not commonly held across all these different care areas. So, I'm used to that, [but it causes] a general little frustration of, 'Oh, why have I got to do this again?' but I want the best outcome, so you do it. I'd like it [if information were shared across organisations, to minimise repetition] as long as it's held securely and it's held by the right people.  Person with care needs

When we tested potential survey questions we found that participants were willing to answer questions about their care and support needs – providing they are not unnecessarily intrusive - and their entitlement to benefits. Questions on housing tenure, and the value of their home, were considered somewhat acceptable, particularly by people who had very little, with some participants acknowledging that information on property value at local area level is publicly available anyway.  

I think I would be okay to say the value of my home, you can look that up it’s already out there if people want to find it. Person with care needs

Participants were also willing to answer questions related to perceptions of their financial status, as these questions were seen as less intrusive and more about subjective feelings.

In contrast, income and assets were considered private matters by most. Participants showed a high level of discomfort when we tested detailed questions asking about their income, pension and savings. Asking about the sources and value of people’s income and assets was considered inappropriate, with participants saying that if they were asked questions about these topics in a survey, they would choose codes such as ‘don’t know’ or ‘prefer not to say’.

I would be very uncomfortable. It feels intrusive, because it is personal details. I wouldn't feel comfortable. Maybe it’s a generational thing? I don't like giving details about my personal situation, anyway, let alone my mum’s.  Unpaid carer

When we asked participants how they would feel about being asked questions on their income, pensions and assets as part of a survey conducted on behalf of DHSC to inform its policy, participants explained they would be suspicious. It was reassuring to hear vulnerable participants being careful about giving away personal sensitive information.

This is a sensitive area…I would need to know more about it. Person with care needs  

As we expected, participants’ suspicion focused on the fear of being scammed or defrauded. But they also expressed worries around data security, and around how the information would be used, for example to make decision about their eligibility for local authority funded care, or about how much funded care they are or would be eligible for. These worries persisted despite explanations of the purpose of the survey, about the anonymity of their responses, and about who would have access to the data they provided.

The thing is, what will they do with the information? How do I know we won’t lose support because we’ve given them information? Unpaid carer

In fact, when explaining that the survey, if conducted, would be anonymous and that the data would not be used to make decisions about respondents’ entitlement to local authority funded care, participants appeared sceptical about the purpose of collecting data.

I can’t see the point. With so little time … there is no benefit at the end of it. The person with care needs will not benefit from them filling out this form, so they won’t be bothered. Unpaid carer

The context of collecting this data is likely to have an influence on people’s willingness to take part. For example, while participants were willing to provide data about their care needs to DHSC on the basis that it deals with health and social care, they wondered why DHSC would want to collect data on their income and assets, as these were not health and care related.

The purpose of the data collection also matters: although people may be willing to provide data for the purposes of care needs and financial assessments, they appeared far less willing to provide sensitive data to inform government policy, especially if this leads to decisions related to a charging reform for care and support. Underpinning this were deeply rooted perceptions that access to care and support should be free at point of delivery, like the NHS.

Why should my dad have to pay for care and support that others would receive for free just because he has worked hard and saved for his old age, when other people haven’t? Unpaid carer

This is in line with other work we have conducted for the Health Foundation in 2023, which showed that half of the public think that it is unfair that social care is largely means tested (51%) and only a third consider this to be fair (34%). Any future reform to social care will need to start by building consensus among the public about how social care should be funded. This could help make a survey asking detailed questions on income, assets and care needs more legitimate among those invited to take part.