Responsible information sharing is key to effective care of older people with frailty
A guest blog from Adam Gordon
The population as a whole is getting older. The reasons for this go back over a century. Improvements in lifestyle, including nutrition, sanitation, health and safety and the welfare state have enabled people to live healthier for longer. Improvements in healthcare have made it easier to detect the risk factors for life threatening diseases, and to take measures to prevent or reduce the impact of these. It is now much less likely for someone experiencing a stroke or heart attack to die or be disabled than it was in the past. Better control of long-term conditions, such as diabetes and high-blood pressure, have reduced the chance of developing long-term complications.
More people living longer with multiple long-term health conditions has led to an increase in the number of people living with dementia and physical frailty, with growth projected to continue until the middle of this century.
People living with any or all of frailty, dementia and multiple long-term conditions present a complex challenge for health and social care providers. They are likely to require input from multiple health and social care professionals, working for multiple different organisations, often in different geographical locations. To deliver effective clinical care, these professionals and their organisations must communicate and collaborate effectively, to ensure care is co-ordinated rather than confused.
Take the example of a man living at home with dementia who is admitted to hospital with fractured ribs, following a fall. On arrival he is confused and unable to tell the team much about his life. The hospital teams will require information about how he manages at home, what this environment is like, any social support he has been receiving, what family he has and how often he sees them. This information will be held by a combination of community healthcare services and the social work department. They will also need information about what medication he is taking, what diagnoses have been made previously and what routine healthcare he receives. This information will be held predominantly by his general practitioner (GP).
Within the hospital, he will be seen by multiple professionals: a trauma surgeon to consult on his rib fracture; a geriatrician to assess his general health and his cognition; a physiotherapist and occupational therapist to assess his mobility and ability to manage activities of daily living; while the nursing staff will assess and keep records on his nutritional needs and continence.
At the point of discharge, it is decided that he needs a period of rehabilitation at home. The assessments of the full range of hospital professionals need to be collated and passed onto the community rehabilitation team – a physiotherapist and nurse – as well as his GP, who will continue to co-ordinate his medical care, and social worker, who will work to ensure seamless transition to a new care package to support the rehabilitation process.
The complexity of care planning and decision making for older people with frailty are outlined by the British Geriatrics Society across a series of documents, including Fit for frailty, Right time, right place, and Ambitions for change.
A recurrent issue raised by patients, and their relatives, during these types of scenarios is that they have to give the same type of information over and over again. Why don’t professionals just read the information already collected? The reality however, is that each of these teams will work with different paper records and computer systems. Because they work for different organisations, they may not be able to share records in a way that meets the UK General Data Protection Regulations (GDPR). These regulations are put in place to protect privacy – a fundamental human right – and must be respected.
As computer systems and data protection approaches become ever more sophisticated, it is likely over time that many of these barriers to data sharing to enable integrated approaches to patient care will be overcome. Meanwhile, and as we work towards this ideal, an important way to ensure that we collect and share the right information between organisations is to agree core standards on what information is required at each stage of this process.
The Professional Record Standards Body (PRSB) was set up to address precisely these types of issues. For example, it has already established standards about clinical referrals into hospital, personalised care and support plans, discharge summaries, emergency care, and referrals for social care assessment. Each of these cover exchanges encountered by our hypothetical patient in the very realistic journey through care I described above.
One area where data sharing generates a lot of uncertainty, is around long-term care homes in the UK. These are often run by private or third-sector organisations, with care commissioned by local authorities and the National Health Service. A lot of data is generated by the care providers and the statutory authorities that work with them. At present this isn’t collated or presented in a systematic way that can help decisions about care. The Developing Resources and Minimum Dataset for Care Homes Adoption (DACHA) study is currently working to address these uncertainties.
Data sharing can often be seen as a threat. But, as illustrated here, responsible information sharing is key to effective care of our most vulnerable citizens.
Adam Gordon is Professor of Care of Older People at the University of Nottingham, a Consultant Geriatrician at University Hospitals of Derby and Burton NHS Foundation Trust and President Elect at the British Geriatrics Society. He tweets at adamgordon1978.