Intended for healthcare professionals

Feature Patient Partnership

The long road to patient co-production in telehealth services

BMJ 2019; 366 doi: https://doi.org/10.1136/bmj.l4770 (Published 25 July 2019) Cite this as: BMJ 2019;366:l4770
  1. Lynn Eaton, freelance journalist, London, UK
  1. lynn{at}lynneaton.co.uk

The NHS Near Me service, which offers online consultations to remote communities in Scotland, heavily involved patients in its development, reports Lynn Eaton, but services can always go further in striving for equal partnership with patients

Increasingly, patients are involved in setting up new healthcare services, from consultation through to designing and running services, with the aim that they better reflect patients’ needs.

Consultations with service users preceded new telemedicine initiatives in rural Wales and Scotland, for example. Consider outpatients in Caithness county in northern Scotland, who face a six hour round trip to Raigmore Hospital in Inverness for appointments.

NHS Highland covers 32 500 km2, from Caithness in the north east to Kintyre on the west coast. It is the largest and one of the most sparsely populated Scottish health boards, and was crying out for a telemedicine service to make specialist care more accessible and cut long journeys.

The NHS Near Me video consulting service launched last year,1 and 10% of Caithness’s hospital outpatient appointments are now provided by phone call or video conference, either from the patient’s home or from a local clinic. The service covers 19 clinical specialties, including haematology and psychology, with more planned. It has expanded throughout NHS Highland and is being tested in Skye.

The project received £28 500 (€32 000; $36 000) additional funding from the Health Foundation think tank to work with patients before, during, and after introduction of the service to ensure it met their needs. The project lead, Clare Morrison, and her colleagues spent six months collaborating with patients, clinicians, and other staff to design the outpatient clinic service at Caithness General Hospital, linking patients there to specialists elsewhere.

Morrison told The BMJ, “The main benefit of co-production is to design a service that works for patients. The only people who really know if a service will work are the people who will use the service, so it is common sense to involve them in service development.

“We heard directly from patients in [formal] consultations, from patient surveys, and through analysis from our feedback team, which handles patient correspondence and complaints.”

What is co-production?

Working in equal partnership with patients is a longstanding goal for health services, and consulting patients to elicit their views on services is common.2 However, full co-production takes their involvement further (box 1).

Box 1

Co-production in health and social care

In social care the concept of co-produced service is established and enshrined in the 2014 Care Act. Co-production is referred to several times in the act as the best way of ensuring people receive care through a collaborative approach to ensure better outcomes.

The Social Care Institute for Excellence, a think tank, describes co-production as “A relationship in which professionals and citizens share power to plan and deliver support together.”4

“Participation means being consulted,” it says, “but co-production means being equal partners and co-creators,” including co-design and co-planning; co-decision making in the allocation of resources; co-delivery; and co-evaluation.

“Normally people employed have more power and resources than the people they are trying to involve. We view co-production as a genuine partnership with shared power,” says Pete Fleischmann, head of co-production. He says that it should involve asking users, “What are your problems, and how can we come up with some solutions?” and governance should include patients or service users as full members, he suggests.

NHS England describes co-production as a “way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation.”5

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“To do co-production well, patients, carers, and communities should be treated as equal partners in service design, delivery, and evaluation,” says Charlotte Augst, chief executive of National Voices, a coalition of health and care charities in England. “They should not merely be consulted after decisions have already been made.

“Co-production is different from one-off engagement or short-lived projects: it is a relationship over time, and should start as early as possible, with planning and prioritisation not just at the point of delivery. It means changing the power balance between services and people,” says Augst.

The NHS Near Me project team lacks any patient members, and no patients lead on evaluating the service or sit on any governing committee. The hospital, rather than patients, decided to provide video consultations, acknowledges Morrison, but patients informed decisions about how to provide the service. They were consulted in small groups and tested the scheme during its development, she explains.

Morrison also went to patient groups, public meetings, and council meetings to seek advice on how the service should be provided and made changes according to their suggestions. Patients said that they felt more comfortable using the service in a community clinic, where staff could help them with any technical questions, rather than from home.

As other areas of the Highlands replicate Caithness’s model—for example, in Skye—NHS Near Me is still harnessing patients’ opinions.

Technology challenges

In Caithness, some patients needed to access the service using their smartphones but lacked a suitable device. So 13 community hospitals throughout the Highlands were equipped with computers and webcams to enable patients to access NHS Near Me.

Patients found using these computers difficult at first, “so we set them up to log on automatically and load the NHS Near Me website,” Morrison explains. Patients said that they preferred a single point of entry for all specialties, a “virtual” reception desk, “so that’s what we put in place.”

This “co-design was essential,” she adds, “as was the principle of testing small, [trialling the service slowly, area by area] so we could quickly change the service several times until it worked for everyone.”

The approach included a six month test phase, including consultation with clinicians and staff involved in all aspects of making outpatient clinics work as well as patients. Patients were asked for feedback after every appointment. Views were also solicited in patient and public forums, including specific meetings about, and demonstrations of, NHS Near Me promoted through the local press; discussions at meetings and by email with the hospital patient council; local NHS community engagement meetings; and meetings held jointly by the NHS and the council that were open to the public. The service recruited a small group of patients to help produce written guides to using the service at home.

This work took time, says Morrison, “ultimately, if a service has been co-designed properly, then the scaling up should be much faster. You don’t spend lots of time fixing problems you have already dealt with in the development phase.”

Patients were also involved in creating a similar telemedicine service, Cartref, in Wales.3 In 2014, Olwen Williams was chief of staff for medicine at Wrexham Maelor Hospital, responsible for community medicine in surrounding rural north Wales.

She and colleagues wanted to set up a service to enable older people to access care closer to their homes (cartref is Welsh for home) and a more efficient service, with clinicians working from a single base rather than travelling to community hospitals.

Of 2000 people aged over 75 years old who were asked whether they’d prefer care delivered face to face, by telephone or text message, or by video call, two thirds said that video conferencing would be acceptable if provided in a community clinic rather than in patients’ homes, she explains.

Following a model used by a housing association to help people pay bills online, a “digital inclusion officer” staff member promoted the scheme to the community, which was crucial to its success, thinks Williams.

Eighty eight patients, aged from 75 to just over 100, volunteered to take part in the pilot. They felt reassured still to be in a clinic with a nurse on hand, says Williams. If they didn’t like the new service they knew they could revert to hospital based consultation.

The team used questionnaires to assess the service in the pilot and discovered that patients needed bigger screens and louder volume.

In both 2015-16 and 2016-17, 78 out of 88 patients said that they would recommend the virtual consultations to family and friends, and 100% said that they preferred the telemedicine clinic to having to travel to a hospital clinic.

True co-production

Despite such patient involvement, Williams hesitates to describe the scheme as “true co-production.” Wales had been pursuing rural health initiatives for more than 20 years and already had telemedicine infrastructure, so patients weren’t involved in making decisions about the equipment, for example. And patients are not formally involved in deciding how to evaluate the service and do not sit on any governing committees of Cartref.

“Co-production for me is that you all get in a room and all decide together what you’re going to do,” says Williams. “We had the concept and the kit already.”

Whatever your baseline, there’s always scope to partner further with patients to improve development, it seems.

National Voices’ Augst, says, “Co-production is about creating services that actually work. People with lived experience know what support and services could make the most difference to their lives,” she says. “It’s about knowing what your core user actually wants, not what the system thinks they want.”

Patient view: Diane van Ruitenbeek

Diane van Ruitenbeek, a retired psychologist and patient representative, helped with setting up NHS Near Me in Skye. She tested the technology at her home and took part in a focus group which drafted leaflets.

She wants two clinics in community hospitals on the island. “I think it’s going to be available in Portree, the main town, but that’s 40 miles away for people like me who live in the south,” she explains. Another option could be to provide access in general practices, but that may not be financially viable, she adds.

Broadband connectivity can be a problem on Skye. “[The videolink] kept failing in the test I did at home,” she says. “If you had mental health problems or lacked confidence that would be an anxiety provoking thing.” She suggests such patients might benefit from having a friend, relative, or befriender with them.

“The service wouldn’t be suitable for all types of appointment,” she says. “My concerns were particularly around getting bad news. That should probably not be conveyed through this system.”

Patient view: Annette Ward

Annette Ward had multiple myeloma diagnosed 15 years ago and has been using the Caithness NHS Near Me scheme for six months. To travel from her home in Thurso to Inverness for outpatient appointments is a 240 mile, six hour, round journey. She has had two stem cell transplants, and one side effect is fatigue. “The journey would wipe me out for a couple of days,” she says, so she was keen to try the service when her consultant suggested it.

“I go to the local hospital in Wick, about 20 miles away, and can drive myself. The nurse sets up the video and makes the call. We wait for the receptionist at Inverness, who asks which clinic we want and puts us through.” She usually speaks to her consultant by video link. “We run through my blood tests, which have been taken before the consultation. He’ll also ask if I’ve any concerns or problems with bone pain.

“It’s made a big difference to my quality of life and is no different from having the consultation in Inverness. I was having a few problems with steroids, and the doctor adjusted the dose.” She can’t fault the service. “I would be happy to do it from my own home, although I’ve not been offered that yet.”

Footnotes

  • Provenance and peer review: Commissioned; not externally peer reviewed.

  • Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.

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