West Midlands Virtual PSC Programme
Awarded to University of Birmingham
Professor Gideon Hirschfield, Senior Lecturer/Hon. Consultant Physician, Centre for Liver Research, Institute of Biomedical Research, University of Birmingham, Birmingham
The total grant awarded is £10,000.00
Duration of award: 30 October 2015 to 30 April 2016 (6 months)
Award details: West Midlands Virtual PSC Programme
The grant was awarded for the development of a virtual PSC clinic from the Queen Elizabeth Hospital, Birmingham, following the success of two pilots of the virtual clinic.
Information about the virtual clinic in Dr James Ferguson's PSC Support Information Day presentation on IT and Opportunities for Patient Centred Care (specifically the virtual clinic part starts at 7m13s):
There is somewhat of a postcode lottery for PSC care, as there are so few PSC specialists in the UK. While the PSC Guidelines recommend the need to see a specialist only once the disease progresses or starts to get complicated, the timing of referral to more specialist care can be difficult to get right.
Only one in ten people with PSC have a great deal of confidence in their care when not looked after by specialists. Patients seek opportunities to take part in clinical trials for PSC, which mainly operate in the larger, specialist hospitals, often many miles from their homes. As a result, people with PSC travel long distances to see a specialist or access clinical trials, because they are not available locally.
The award helped to develop a virtual clinic from the Queen Elizabeth Hospital, Birmingham. It enabled the research group to access the larger funding required to set up virtual clinic appointments and evaluate them.
Ultimately, the PSC Support funding led to the receipt of more substantial funding to set up and evaluate a remote consultation service. They looked at the views of both consultants and patients using remote consultations compared to the usual, face-to-face care.
According to patients, remote consultations saved time and money, were less burdensome, and caused fewer negative impacts on health.
For patients reporting negative health impacts from travel, the option of a remote appointment was strongly welcomed:
“To Birmingham would take me 4 hours, and 4 hours back.... To be perfectly honest, it made me ill for days.”
Unfortunately, technical issues were common, and only 17% of patients received all appointments over video. This study was conducted before the COVID pandemic, when teleconferencing on platforms like Zoom and Teams started to become more widely used.
Having clinical test results (e.g. blood test results) available to discuss during the virtual appointment was important but sometimes challenging. The most common reasons for the lack of blood test results were that tests had been done but results not passed on; tests were done, but key analyses were omitted (usually urea, electrolytes, and tacrolimus); the patient did not undergo the tests; or because GPs needed clarification about what was required.
All patients reported satisfaction with the care they received although some noted that this might not be satisfactory if they were unwell. For example, one patient was worried about being unable to demonstrate physical symptoms to her consultant.
Overall, both consultants and patients saw remote consultations as positive and beneficial. With the timely clinical tests/results in place, working technology and patient choice, remote consultations for routine follow-up care are win-win for patients and clinicians.
Using technology to conduct routine follow-up appointments remotely may ease some of the resource and infrastructure challenges faced by the UK NHS and free up clinic space for patients who must be seen face-to-face.