Joint with Understanding Patient Data, this is our second blog on the benefits of enabling people to access their health records. Dr Richard Fitton, former GP and Caldicott Guardian, highlights four ways in which giving patients access to their records can already help inform their healthcare and lifestyle choices, and considers what might be possible in the future should we get this right.
In England, GPs have maintained a lifelong record for all registered patients since 1928. These records are kept on paper and/or in digital format. The paper records are kept in GP’s surgeries and the digital records are increasingly kept securely in the cloud. The GP is the ‘data controller’ – this means that they decide how and why any personal data from these records is processed – but patients can also access their own health records, including their family history and details of any past or current health problems and the treatment or care they’ve received.
1.Immediate care when patients feel ill, are ill, having an operation or have an accident.
The average patient attends casualty once every three years and will have major hospital admissions occasionally during their lifetime. These attendances will increase in frequency towards the end of the patient’s life. However, patients are generally told perhaps less than a quarter of what is recorded in the notes and remember only 30% of what they are told. Shared access to their records by the patient or their “family” increases the chance for patients to remember important details. Access to the record also increases people’s ability to talk about their family history of specific conditions with professionals. Families and carers can also help the 20% of patients (including children) who lack mental legal capacity when involved in immediate care.
Changes in health status following urgent care may impact what you can do day-to-day and may herald the need for changes in lifestyle choices. Say for a diagnosis of appendicitis – when can the patient lift or drive again? For pneumonia– when can a patient expect to go back to work? Following a heart attack – when can a patient go back to the gym? And when recovering from a stroke – how can a patient adapt a house to manage climbing stairs? Families’ ability to alter lifestyle choices is improved by record access which clarifies the diagnoses, severity and course of urgent health problems.
2.Continuing care for long term conditions and disabilities
A patient with a long term condition or disabilities may have to monitor blood glucose, weight, renal function, symptoms of heart failure, autism, schizophrenia, cancer, etc. Yet, the patient will perhaps have only an hour or two of face-to-face contact with a health professional each year in which to understand their condition or disability. Meanwhile the professional will have had perhaps 10,000 to 30,000 hours of training and experience. To put the patient and the medical professional on a level footing and allow them to have meaningful conversations and take shared decisions about the patient’s care, the patient requires access to as much of their up-to-date health data as possible using their record access.
3.Health promotion and population health – what the public does itself
Bad diets and unhealthy lifestyles have become the biggest threat to life expectancy, fuelling seven in 10 deaths, a major Lancet study has found. The research, which included evidence from almost 200 countries, found that increases in life expectancy - achieved thanks to improvements in sanitation and immunisation - are being eroded by the global obesity crisis.
A typical adult now watches around 24 hours of television a week. One in 14 spend more than 40 hours a week watching television. Enabling people to spend time ’watching’ and interacting with their own, interactive health record occasionally instead, could be beneficial for the patient and for the population. A patient’s record contains family histories, blood test results, weights, heights, BMI readings and QRISK Scores (which are used to work out someone’s risk of developing different health problems) which can direct patients to lifestyle changes that increase their chances of living longer, healthier lives.
4. Preventative health care - what the NHS does to the public
A number of preventive services are delivered to patients through the NHS either via GP surgeries, community services or hospitals. These include the cervical cancer, breast cancer and colon cancer screening programmes, and the child health programme, dealing with issues from pregnancy and the first 5 years of life and various immunisation programmes from infancy to adulthood. Access to the records of these procedures by patients and families would help promote the benefits of these interventions and of other preventive procedures, and would allow the patient to share preventative history with professionals during immediate or continuing health interventions.
And in the future?
I see a lot of untapped potential from enabling people to access their health records. With support from their GP, it’s a tool for individuals and families to better understand their health now and what might happen in the future. A patient accessing their record is way for them to participate more in decisions about their health. Whether it’s following a recent acute event or thinking about longer term lifestyle changes. Who knows, one day could we see patient access to their health records be the tipping point to help make us a healthier society? I’d like to think so.