Dr Sam Patel: January 26, 2021
What do people want from their health and care services and why does it matter if their needs are met? Two simple questions but with many different answers.
The NHS was born out of a need to maintain people’s ability to work and support themselves and their family without the fear of ill health or injury. Seven decades later the aims of the NHS have been transformed by modern medicine and the ability to extend life. Now we need to consider the care for many more of our frail and elderly members of society that modern medicine has helped. Expectations of people have changed over time. If you break a bone you need it set. If you have an infection you might need an antibiotic. What people really want in my experience is to be better and back to the way they were before they had an injury or illness. Unfortunately, that is not always possible.
So how do we measure successful ‘treatment’? The measures of success in health and care are based on the assessment of the doctors, nurses or other health and care workers. The ones who diagnose and treat people with illness. Sometimes there is a cure, or the problem is long term with people seeking help over a prolonged period. Often treatments use a medicine or drugs that help with conditions such as high blood pressure or diabetes. The professionals are interested in how well a person’s blood pressure comes down or how well their blood sugars are controlled, but is that the measure of successful treatment for a person with a long-term condition?
Ours is a system which is free at the point of care provided for by taxation and is limited in the resources available for health and care. The system needs to know that the use of resources is effective in treating people’s illness and meeting their care needs. Waiting times and targets are the usual tools to measure performance but are limited, often producing artificial changes to meet goals rather than address underlying problems. The real problem lies in the difficulty in collecting the detail needed to make assessments of care in a meaningful, appropriate and nimble way.
We collect a lot of data on a person’s health electronically for many aspects of clinical care. In hospitals, professionals use that electronic information to tailor treatments according to response, but they do it by reviewing test results and manually adjusting treatments. In the community where there are ten times as many treatments administered with limited numbers of clinical professionals, it is impossible to do the same. However, we are close to being able to collect that data and assemble it into meaningful information for individuals in a way that will let machines do some of that review process, as well as supporting clinicians to make the right adjustments to a person’s treatment. At scale, we can assess the response to treatments across a population and determine what is most suitable for an individual. We know that prescribed medicines work differently for individuals, dependent on multiple factors and as we understand more of these factors, we can prescribe medicines more effectively and with fewer side effects. This is the basis for individualised or precision medicine.
At NES, we are helping to build the infrastructure for collecting and using this electronic clinical data in a way that will allow its meaningful use and to allow the capability to make better decisions for individuals and wider health and care systems. Will this address what truly matters to people who are unwell or need care? We might expect that by treating illness or addressing a care need that this will make life better for a person, but experience tells me that this is not always the case. There are expectations that we will never be able to achieve, but there are other aspects of a person’s life that health and care can help with if we know. For some time, clinicians have used forms or questionnaires to ask people how they are and how they feel about their treatment. Initially used in research, they are now being used for patient care. Some of these forms are now electronic, but they all suffer the same problem; they ask what clinicians think the important questions are. They are well received by patients because they are a method of giving some measure of their lived experience, but I think that they could be so much more.
Co-designing some of these questions may help, but we won’t know until we ask people what is important to them. It will be different for different groups with different needs. As we are able to link information in health and care with data from electronic forms, we will evolve to include wearable technology, eating habits or physical activity. By being able to understand the underlying associations with different sets of data we should be able to tailor treatments for the unwell and help to keep everyone else healthy. As a Clinical Lead with NDS, I believe that we should have the conversation with people about what they want and how they think we should do this for them before we build systems to link the different parts of a person’s life.