The importance of ‘Information About Me’: understanding the hidden causes of delays in discharging frail older people from hospital

Delays in discharging older people living with frailty from hospital are caused by a complex range of factors, but a key factor is how medical and social information about patients becomes fragmented during their stay. This is the conclusion of a study in two large NHS hospitals led by National Institute for Health and Care Research (NIHR) funded researchers at the Universities of Bristol and Birmingham, published in Ageing and Society.

The study team followed the patient journeys of 37 patients over the age of 80 who live with frailty, and spoke to patients, family members and staff about their experiences. The patient journeys confirmed expected sources of delays. These included investigations and specialist team reviews, delays in providing equipment or difficulties in finding care packages.

However, the research also revealed that working practices and communication methods between different professionals and across organisational boundaries inadvertently caused delays. The research team describe what happened to patients during their hospital stay as ‘de-construction’, where fragments of information about a patient were gathered and stored at different times and in different ways. This included clinical information like test results and assessments.

It also included the patient’s personal history, such as their home and family life and what their daily life looked like before they came to hospital. The research team called this ‘Information About Me’. When discharge planning began, staff had to try to ‘re-construct’ the patient’s information. Re-construction was difficult and time-consuming and involved a range of different professionals.

‘Information About Me’ played a key part in the re-construction process, but the researchers saw that it was often missing or incomplete. If it was collected, it wasn’t always easily accessible and was often lost, especially if the patient moved wards. It was also perceived to be of lower value than more readily available information such as medical test results.

These findings have led to the following recommendations:

• Promote the metaphor of patient de-construction and re-construction among professionals to raise awareness of the key role of ‘Information About Me’
• New electronic forms should avoid using standardised questions, to allow the patient’s personal story to be shared between staff in a narrative, rather than using tick boxes
• Work with patient and carer organisations to highlight the key role of ‘Information About Me’ to patients, families and carers

As part of the final recommendation, the team have developed an animation that explains the issue and an ‘Information About Me’ form for patients and their carers.

Sarah Biggs, whose late mother endured a lengthy hospital stay following a fall in her 90s, is a public contributor on the research team. She said:

“Staff need to understand what the person’s baseline was before they went into hospital. If they can walk and talk and dance and listen to music and be independent, then they need to know that. But if they can’t do any of those things, and this is how they currently function and this is the help that they get, then that needs to be understood too. With my mother, I never had the chance to set this out – nobody seemed to be listening.

“What would have been most helpful when my mother was in hospital would have been having a single point of contact at any time, who would have known all the information about her, and been involved in decision-making. That’s why I want people, who might be in a similar situation now, to know that they can fill in an ‘Information About Me’ form and it could make a difference.”

Dr Sabi Redwood, Deputy Director at the NIHR Applied Research Collaboration (ARC) West, said:

“We want to encourage a dialogue between patients, their family members or carers and health and care professionals about this ‘Information About Me’. It needs to be recognised by all parties as being essential to helping with the discharge process. Professionals should request the information from patients and document it consistently. It shouldn’t just be collected for their own assessment but also for other professionals to use, avoiding repeat requests for the same information from patients or family members. Patients and carers should also be encouraged to provide this information, preferably already captured in a text or electronic format that can be shared with staff. This is where our ‘Information About Me’ form could be very useful.

“Most often the burden of providing this information to all the professionals involved falls on the family and carers. Our research showed that carers were left feeling distressed and alienated by having to repeat the same information over and over again.

“We suggest that the role of patients and family members or carers in the de- and re-construction processes is recognised and encouraged, as they are often the only source of continuity. This partnership approach would value ‘Information About Me’ as essential to discharge planning.”

Dr Kyra Neubauer, Clinician for the Complex Assessment and Liaison Service at North Bristol NHS Trust, said:

“Although geriatricians have long recognised the importance of ‘Information About Me’ this research confirmed that such information needs to be collected as early as possible and recorded in a way that makes it easily accessible to all staff. If patients, relatives and carers understand the value of this information, they can help hospital staff to facilitate safe, appropriate and speedier discharges for themselves or their loved ones.”

This research was a collaboration between NIHR ARC West and ARC West Midlands.

Find out more about the ‘Information About Me’ campaign at:
https://arcwestarchive.org.uk/information-about-me