BMJ article “How can doctors meet relatives’ information demands?”

The British Medical Journal covered PKB in its article about giving carers and family members information about a patient’s progress. This is of course important for the patient and everyone looking after them, and it helps make sure the patient gets the best care at home. But waiting for face-to-face appointments is difficult for relatives who cannot always be there and inefficient for time-poor professionals who must repeat the conversation for each relative.

The full article is worth a read as it covers the issues as well as PKB’s approach:

Patients Know Best, which is used by more than 60 healthcare organisations in the UK including acute trusts, clinical commissioning groups, mental health trusts, and social care providers, and covers 2.3 million people in north west London and 1.1 million in Surrey, takes a different approach. If the patient consents, their carer or any other family members can access their medical records. The patient can choose to give limited information to some relatives and full information to others. The record is divided into general health, for the majority of the information, but also sexual health, mental health, and social care.

It was not set up to assist relatives, but founder and chief executive Mohammad Al-Ubaydli says they have benefited greatly and this in turn helps patients as well. For example, carers say they feel less anxious because they are using Patient Know Best, and patients say they feel looked after seeing all the information, and also less anxious because their carers are less anxious.

The confidentiality box covers PKB’s advanced consent mechanisms:

When doctors are using personal health records such as Patient Know Best, the notes can be shared with other healthcare professionals through implicit consent for direct care. Explicit consent allows carers, researchers, and anyone else the patient agrees to have access. Under GDPR legislation (and the previous Data Protection Act) the patient has the right to share data about themselves with anyone they choose.

We knew from our early usage at Great Ormond Street Hospital how important giving relatives access to a patient’s record is to the family but also how much it helps with the productivity of professionals and the safety of care.

We are now working on an evaluation study of notifying relatives real-time about inpatient updates i.e. the latest vital signs, nursing notes and bed transfers. If the relatives know, they don’t need to ask.

We have also been working on a new user interface for carers to more quickly switch between their own record and that of patients they are looking after. Please contact us with your comments and questions.

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A copy of the original article is below.

How can doctors meet relatives’ information demands?

BMJ 2018; 363 doi: https://doi.org/10.1136/bmj.k4514 (Published 29 October 2018) Cite this as: BMJ 2018;363:k4514

Hospitals need to strike a balance between the need for staff to speak to carers and the time this takes. Jacqui Thornton explores some initiatives that are providing solutions

During the junior doctors’ strike, many consultant bodies were staffing wards to a higher level than usual. As a result, geriatrician Eileen Burns was on her ward in Leeds during visiting times and thought that it would be a good opportunity to talk to some patients’ relatives.

She spoke to a patient’s son at some length, and then another son turned up and wanted to have that conversation all over again. She did, of course, speak to him but, she says, “I thought, ‘For goodness’ sake—let’s be a bit reasonable here.’”

Burns is a firm advocate of proactive engagement with families—but this example highlights the thorny question of how time poor doctors, whose duty is to the patient, should deal with relatives who want information. What is the correct balance between the need and desire for information and the time it takes to provide it?

Complaints and investigations

There are varying views on the size of the problem and few data on relatives’ concerns about a lack of information. The latest NHS statistics found that around 15% (28 353) of complaints in 2017-18 were specifically about communication and a further 10% (19 026) were about staff attitudes, values, and behaviour.1

The GMC received 492 complaints about doctors in 2017 that fell into the category “Communicating effectively.” Around a fifth (98) of these were assigned to the subtype “Failure to share information with family or friends.” Of these, 28 were deemed serious enough to be investigated.

There appear to be three categories of relatives: carers, typically of older patients, who are very involved and generally have good relationships with doctors; family members who work office hours or live a distance away who attend, often anxiously, in the evenings and at weekends when the senior doctors responsible for the patient may not be around; and a smaller category of distant relatives who live abroad or far away in the UK who call or email doctors or who come in as a one-off, and are often the most demanding.

Anecdotally, Carers UK says that families believe there is a problem. Director of policy and public affairs Emily Holzhausen says communication with doctors is commonly discussed. “Carers say they’re not given enough information. Everyone realises doctors are time poor and pressed, but hospitals are confusing places and this is the only time carers might have to speak to doctors and understand what is going on.”

David Oliver, a consultant in geriatrics and acute general medicine who highlighted the problem in a comment piece for The BMJ,2 says it is “absolutely the right thing to make yourself as available as you can be to speak to people’s families.” He points out that family involvement has tangible benefits—improving the quality of care and discharge, improving communication, and reducing complaints.

But the flip side is the risk that it will dominate your time on the ward.

Burns, who is also president of the British Geriatric Society, says that in most cases communication is straightforward and not particularly time consuming—with the right balance and initiatives. There are a number of formal schemes, technological solutions, and individual measures by doctors and trusts that are providing solutions.

Open visiting

Open, unrestricted visiting was introduced in some UK hospitals in 2015, one of the first being the then Heart of England NHS Foundation Trust. Unrestricted visiting has the benefit of enabling carers and visitors to speak to the relevant doctors on ward rounds.

Consultant geriatrician Helen Chamberlain says there was trepidation at the beginning but the positives quickly became apparent. Ward rounds took a little longer, but falls were thought to be reduced and it was believed that more open communication reduced formal complaints.3

One of the drivers for change at the trust was John’s Campaign,4 which fights for patients with dementia to be supported by their carers in hospitals. Cofounder Julia Jones says: “It’s not only that the relatives need information from the doctor—the professional needs input and information from the relatives.

“It’s not an optional extra done by nice doctors, it’s an essential aspect.”

Central Manchester University Hospitals NHS Foundation Trust trialled open visiting as part of a Carer Passport—a system in which an organisation provides a record that identifies a carer and sets out an offer of support, services, or other benefits in response.

Nearly three fifths (59%) of staff said that open visiting had improved communication between staff, patients, and their relatives. Before the pilot, only 23.5% of carers and patients thought that staff were available to discuss care and treatment—by the end of the pilot this had risen to 100%.5

Oliver’s ward in the Royal Berkshire NHS Foundation Trust also introduced unrestricted visiting as part of a quality improvement study that had shown, among other things, that junior doctors were spending nearly three hours a day between them with patients’ relatives.

Now, for 28 patients there are generally 10 to 12 families present during rounds. While it adds an average of 30 minutes on to each round, Oliver says it is well worth it. “We never looked back. Open visiting greatly improved communication and we were able to interact with patients’ families in real time on the ward round.”

Patient records access

Nicole Naylor, head of operations at the Patient Information Forum, which supports organisations and individuals that provide information, says it’s understandable that doctors dislike endlessly repeating information to relatives—but that patients often feel the same way about repeating their history to different healthcare professionals.

One way to prevent this is to have all of the patient’s clinical information in a personal health record (PHR) visible to all the clinicians engaging with them, accessed through a smartphone or tablet. An added benefit is that the patient feels in control of their data; they can inform carers and relatives and show them test results, reducing requests to speak to doctors.

In a recent review of PHRs by the Patient Information Forum, Richard Pantlin, a specialist on social care IT systems, said giving carers access to a record like this would help them understand more fully what is going on.6

There are a number of organisations providing access to PHRs to patients and, in some cases, relatives. Myhealth@QEHB was introduced in Birmingham by consultant hepatologist James Ferguson in 2012. While it was not set up specifically to improve communication, it has done just that, and has expanded into 20 specialties, including geriatric care, and is used by 20 000 patients.

As well as patients being able to access much of their clinical information—including letters, appointments, and laboratory results—it’s a two way street: they can also submit information directly to their consultant, allowing them to respond where necessary and add their own appointments at and away from the hospital. It is particularly effective for patients with long term conditions, Ferguson adds.

Giving patients access to notes helps with any potential communication problems between doctors and family as the patient remains in control and keeps them informed, he says. “We are very careful about giving relatives access. It’s a bit like showing them your bank details—it’s very personal. It’s your health record and no one else’s.”

Patients Know Best, which is used by more than 60 healthcare organisations in the UK including acute trusts, clinical commissioning groups, mental health trusts, and social care providers, and covers 2.3 million people in north west London and 1.1 million in Surrey, takes a different approach. If the patient consents, their carer or any other family members can access their medical records. The patient can choose to give limited information to some relatives and full information to others. The record is divided into general health, for the majority of the information, but also sexual health, mental health, and social care.

It was not set up to assist relatives, but founder and chief executive Mohammad Al-Ubaydli says they have benefited greatly and this in turn helps patients as well. For example, carers say they feel less anxious because they are using Patients Know Best, and patients say they feel looked after seeing all the information, and also less anxious because their carers are less anxious.

Volunteer ward visitors

In South Devon, a system of unpaid volunteer ward visitors has been introduced to act as liaison between carers and staff. These visitors, two for each ward, can explain how the ward works and the steps towards discharge, which can be confusing to new patients and carers and can give rise to communication problems.

The scheme – which was trialled in four acute wards in Torbay Hospital and three community hospitals at Paignton, Brixham, and Newton Abbot – has shown that the carers feel more valued, and that in the sometimes frenetic atmosphere of the ward there is the opportunity for the carer to have a lengthy conversation with a ward visitor who can then suggest or request staff deal with a certain matter.

Katy Heard, carers and volunteers lead at Torbay and South Devon NHS Foundation Trust, says the scheme can ease communication with doctors and other NHS staff. In the most recent evaluation interviewing 181 carers, 31 said they had had communication problems but 55% of these had been completely resolved with the help of the ward visitors.7

Family Integrated Care

A number of UK hospitals have introduced the Family Integrated Care (FICare) model, which integrates families as partners in the neonatal intensive care unit team. Evidence from a trial published recently in the Lancet8 shows that the system reduces parental anxiety and stress, as well as resulting in fewer infections, and improvement in infant growth and breastfeeding rates.

Leeds Teaching Hospitals NHS Trust introduced the model three years ago, with parents acting as the main carer for the baby as part of the healthcare team; since then complaints, 90% of which were about communication, have reduced to none.

Consultant neonatologist Liz McKechnie says: “It aims to bring the parents right back into the centre of the child’s care. We do huge amounts of education and coaching and mentoring. It’s made a massive difference to the communication that we have with families.”

She says the parents’ presence on the ward round helps the consultants, because they are the only consistent factor – the nurse and junior doctor are likely to have changed. “The one person that knows that child better than anybody is the parent, and they can give me precise information that is difficult to get when staff are rapidly changing,” she said.

One aspect of the improved communication has been the use of vCreate9 – a secure video sending system where nurses take short videos of the babies and send them to parents (see box).

The idea came from discussions between families and staff at the Royal Hospital for Children in Glasgow. Neonatologist Neil Patel and his colleagues have been developing their own model of FICare there by establishing the Helping Us Grow Group (HUGG) in 2016, which has monthly meetings to listen to staff and parents.10

Neil searched for an industry partner and began collaborating with video technology firm vCreate, which adapted its system for use in his neonatal unit as a pilot.

Other simple but effective innovations in Glasgow include having shared whiteboards at each cot space. Families are able to leave messages for staff, including when they’ll be present to care, and which care they want to be involved in. Staff, especially those on night shifts, write updates and messages of support.

The active involvement of parents is also being used in paediatrics at Birmingham Children’s Hospital. Here, there is a special “What does the family think today?” section on the patient observation chart.11

McKechnie thinks the FICare model would be beneficial and applicable across all healthcare, but particularly elderly care.

“It’s perfect – relatives that are going to be caring for a loved one at home have got to learn the skills to be able to do that effectively, and get the support to do that effectively.”

vCreate: “It makes the work even more satisfying”

Since vCreate video sharing technology was first introduced at Glasgow’s Royal Hospital for Children in March 2017, it has spread to 20 other neonatal and now paediatric units.

A nurse films a short video and uploads it to a secure server. Parents have a login and get an email alert when there’s a video available. They can download it to form a diary of their baby’s care.

Consultant neonatologist Neil Patel who partnered with vCreate to enable its use in neonatal settings says they provide reassurance rather than clinical information, and show that someone cares. He believes there is a role for such videos in other specialties, including geriatrics, and outside acute care in nursing and residential homes. “Anyone who is away from a loved family member would appreciate some kind of update.”

Patel says that staff, even though they are busy, do find the time to make the videos because it’s straightforward and builds the relationship with the family further, as well as reducing phone calls to the ward at busy handover times.

“Staff usually do it overnight when things are not quite as intense. I think, actually, it’s a benefit to us; it makes the work even more satisfying,” he says.

Confidentiality issues

David Oliver, a consultant in geriatrics and acute general medicine at the Royal Berkshire NHS Foundation Trust, says that the only downside to open visiting is that there isn’t time to keep taking people off to quiet rooms and so maintain scrupulous confidentiality; it’s hard not to get drawn into bedside conversations that other people can overhear.

New build hospitals with increased use of single rooms could prevent this to some degree; at Queen Elizabeth Hospital Birmingham, for example, which opened in 2010, more than 40% of its 1213 beds are in single rooms, offering increased privacy.

Leeds geriatrician Eileen Burns says she doesn’t think patients are concerned about relatives being told too much. “I can’t think of a single time a patient has complained that I have spoken to family about their condition. It’s much more common for people to complain because of poor communication.”

There are some innovative ways to ensure confidentiality. Pinderfields Hospital has introduced Carer’s Passport to 900 carers. A special password allows nurses to share detailed information about a patient over the phone. Positive reported outcomes include carers feeling valued and able to communicate the patient’s needs to hospital staff.9

When doctors are using personal health records such as Patients Know Best, the notes can be shared with other healthcare professionals through implicit consent for direct care. Explicit consent allows carers, researchers, and anyone else the patient agrees to have access. Under GDPR legislation (and the previous Data Protection Act) the patient has the right to share data about themselves with anyone they choose.

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