We spoke with care leaders representing providers, relatives and care management systems to ask them what the transfer from paper to electronic care recording means for future transparency and care quality.
CHP: Could I start by asking for your thoughts on how widely electronic care information should be shared?
Christine Asbury (CA), CEO, WCS Care: The personal data should not be shared very widely at all. It’s personal data that is relevant to individuals and their relatives and their immediate carers. They are the people who should see it. The power of it for us and we are just beginning to appreciate this is what the amalgamated data can show us and how we can use that to improve the service. As an example, we have just started to look at what we know now across the organisation about what we are delivering. We have picked one particular topic and that was fluid intake every day. We now use that data to show us how many people have not reached our target of 1.5 litres of fluid a day. When we started monitoring this about six weeks ago there were 120 people recorded as not reaching that target. It doesn’t mean they didn’t get that fluid but it wasn’t recorded. As of this week, the average is four people a day. So at 3.30pm every day one of our service managers can go into the system and can see that four people haven’t had sufficient fluids. They can then immediately drill down to see who those four people are and what the situation is. They can then ring the home manager and say Mr Bloggs hasn’t had his 1.5 litres of fluid, what’s that about? People who know about care know about the impact on UTIs, falls and cognitive function of not drinking enough. That’s the way you can use the data.
CHP: What are your thoughts about sharing this information with families and the regulator?
CA: I think the regulator has so far been a bit overwhelmed by the extra information provided by electronic data. They are just not used to seeing that much accurate information. The same with commissioners. We have got commissioners who have started to come to people’s reviews and equally find it hard to see how much information we now have on people. It’s obviously good because we can actually evidence care we have delivered at any moment. I agree with the principle of relatives having constant access to this information as long as it’s done with the right permissions and the right consents and it’s used carefully.
Samir Patel (SP), Director, Oaklands Rest Home and Executive Director of the Hampshire Care Association: The Residents Gateway system we have had has been invaluable. One of the challenges we have always had in our 30 bed nursing home was getting the family’s involvement in the care plan review every month. People are busy and they can’t always make it. Whereas by sharing the gateway we’ve found we have had more feedback and response from families. Hopefully, it’s educated them a little bit as well about what exactly goes into the delivery of care.
I would be a little bit more hesitant around the regulators having constant access. We as providers should have the power to give that information to them if there is an issue. With an electronic system we can do that now within a matter of minutes and the same for any query from the commissioner. There’s no comparison in terms of real time information.
Jonathan Papworth (JP), Director, Person Centred Software: Would it be useful if there was a care home where there were more than a certain number of people drinking less than the required fluids then CQC could receive that information and go and inspect? Fluids might not be the right measurement, but it should be possible to come up with say 20 different measurements that are reported anonymously every month.
Emma Williams (EW), Relatives and Residents Association: Some of our Trustees have had experience of some computer systems that haven’t been altogether effective. One of our Trustees was working with a care home that had a very poor rating and part of that rating was terrible records. So they brought in a computerised system in order to solve it. It didn’t solve it and nothing changed. It’s really exciting that the care sector is embracing computer systems. It has to be better for the carers and it opens huge opportunities for breaking down data. We would love to see relatives having more access because it’s a lack of knowledge of what’s going on that can be really scary. If relatives live far away and you tell them their loved one is fine, It doesn’t actually mean anything. We would like to see more openness. It’s a wonderful way to help the transition of helping the resident to move into care and helping the relative release that responsibility while being able to feed back. Often relationships break down because relatives don’t know how to feed back or they are not wanted to feed back. Certain care homes have shut relatives down. Having a system that embraces that and prompts the carers to think about that aspect is quite exciting.
SP: It’s useful for us to be able to give information to the relatives. It’s also invaluable for us to get information from them. That one nugget of information can be precious in treating someone with dementia. It could be something we hadn’t been aware of – somewhere that person had lived or worked and the comfort we can then give – you can’t put a price on that. It’s a two-way thing and definitely helps us provide better care.
Robin Wells (RW), Executive Non-Director, Person Centred Software: It benefits greatly the staff because many phone calls are nuisance phone calls because they are interrupting the care process. Those calls can now almost completely disappear because people can see what’s happening in real time via a relatives portal.
CA: I’m surprised by how many people don’t want to know what’s going on on a daily basis which of course is their right. We do get in every home one or two people who are very particular about the care that’s being delivered and that’s quite right too because we’ll only get it right by getting feedback from the resident or the relative. I don’t think we should be assuming that electronic care recording is going to improve the quality of care. Recording is only as good as the care you deliver. What it does bring is a lot more other benefits which might include understanding a lot more of what is going on in the home. It’s also easier for the care worker because they can record in the moment very fast and it also gives us the ability to improve the care by putting down quality markers that we want to attain.
SP: Commissioners will view it as way to reduce staff and drive price down which an electronic system will not do. It’s just a way for us to spend more time with our residents.
CA: It’s certainly more accurate if you are recording fluids in the moment than if you are doing it at the end of the shift.
SP: If we do go down the route of sharing everything in real time with the regulators I’m sure the commissioners won’t be far behind. If they try to look at that to determine the price then we need to be very wary of that.
CHP: Who should set the standards of data being recorded?
JP: In Australia there’s a thing called the Aged Funding Care Instrument which is used from a commissioning perspective to determine what band people’s funding is. Australia is a very different care model because it is almost entirely publicly funded. Whereas in this country, someone’s needs increase but the funding stays the same until you can force the local authority to realise that the funding’s changed. A standardised assessment for the proof of funding needs, as a result of recording of the care that’s been delivered, might be a useful tool.
In the UK there is no standardised assessment of need. Everyone does it their own way. In Australia and New Zealand they are not allowed to deal with any specific assessment other than the ones the government agrees to and that is because the government funds all the care. Whereas in this country it’s much more fragmented so we haven’t got any standards. I just think it would be useful if there was a standard that everyone could work towards. The trouble is who’s going to drive it?
CA: I was at one home recently where a resident said: “Can you get me a cup of tea?” And one of the housekeeping staff was wonderful, she said: “I will and I’ll sit down and have a cup of tea with you.” I thought that was such a fantastic moment of care but how would we record that as a marker of quality? One of our values is the standard you walk past is the standard you accept. If I walk past a toilet and it’s disgusting then I will tell someone or I’ll clean it up myself.
EW: In some cases it is measurable particularly in people with dementia. If a person feels isolated or shut down. There was a statistic, admittedly a few years ago, that showed that outside personal care, carers spoke to residents an average of two minutes a day. There’s really basic levels of care that are still being missed at certain homes.
JP: And everything there is measurable. It’s a low standard but it is at least measurable. The reality is that the relatives feel a certain amount of guilt because their relative is in a place that they wouldn’t want to be. But if they are engaged in that care they can have that guilt relieved particularly if they realise that their relative’s care needs have increased since they left home and they can get comfort from the fact that they are in the right place and they can then help correct that misperception about elderly care homes.
CHP: Should we be working toward a system that can be standardised across health and social care?
JP: The big issue for me is when someone has been cared for lovingly in a care home goes to hospital and they come back in a real state. They have not been given appropriate care because the hospital didn’t know what appropriate care was. They can’t cope with individuals. They can only cope with specific problems. They can fix a broken knee but they don’t know what a person’s needs are.
SP: From a commissioner’s view the quick fix is to get them to a nursing home. If there was a way for us to share information to explain to them that we can rehabilitate people that would be wonderful.
CA: We’ve just started a project with one of our households in our new care home with the local Foundation Trust. They are using our electronic care recording system to assess their patients. There’s a certain amount of trust in that. That came from our initiative because we believed in our system. The assessments of people who are essentially at a ward within our home are happening within an hour and a half rather than 24 hours. The fact that they are using our system gives us confidence. We can look at how they have assessed someone and decide if we will be able to meet their needs which we almost always can. There’s a whole range of information they would never be able to access. It would be fantastic if people going into hospital from our care homes and coming out again were all using the same recording and analytics and that is was easy and accessible for a care home to use.
RW: That could create another revenue stream for you as an additional service. Because you know they are coming back into your care it’s in your interest to know that the good care you have been providing will be continued.
JP: We don’t see any issue at all with people using multiple systems. The NHS can carry on using their system but there can also be an eco system that amalgamates so everyone can see the data that is appropriate for them to see.
SP: I think the mindset is starting to shift and people are starting to appreciate the power of technology.
JP: We have passed the early adopter stage now. It will be a very interesting next five years to see what the whole of the market does.
CHP: What is your vision for how you think electronic care data sharing should look like in the future?
CA: I would expect it to be widespread and expect it to be as natural as it is now to check our texts on our devices. I would expect it to see it as one of the major conduits between relatives and care providers.
SP: We still need the people to deliver the care and I hope that commissioners don’t see it as a way of cutting costs. We will all be using it and will have to embrace it.
JP: What about providing anonymous data to technologists such as IBM’s Watson cognitive system or Google’s Deep Thought? They have been able to work through very large amounts of data and come up with links that the human brain wouldn’t be able to find without spending masses of time. Could we use this as a method of getting countrywide analysis so that we can and try find themes that help dementia and Parkinsons?
CA: We have a relationship with Coventry University. They are using five PHD students to look at five different areas of care. They are looking at quality of sleep and how acoustic technology and light can affect this. Our data will be used anonymously to help inform that research. It’s definitely a good idea. It can tell us over a quantity of time about what works and what doesn’t but we should be a little bit careful about opening the floodgates and sharing the data with everyone.
EW: You have got to be really careful to ensure that your data is coming from homes that have cracked it. Certain parts of the sector would really benefit from sharing good practice. Managers can be very isolated. Staff are often working in closed communities where bad practice can be passed on. You have to be very clear about where you are getting the data from, however, and ensuring that it is good quality.
CA: it relies on the recording system being one that you can’t interfere with much. We have to record people’s emotional well being with every interaction. That is a subjective assessment. It’s important for staff to know that it is ok for them to record when someone isn’t happy. It shouldn’t be used to limit the diversity of the sector to say that there’s only one way to do things.