What is the challenge your project is going to address and how does it connect to your chosen theme?
35,800 people in the UK who have received a kidney transplant are required to attend review clinics at the renal unit/transplant clinic at least every 3 months. Although the appointment itself may only take 15 minutes, the time away from home might take at least half a day because of travel and specific blood tests which need to be taken at the tertiary Trust (not locally). Some Trusts run ‘bloods only’ clinics without a face-to-face consultation. Barts Health NHS Trust runs ‘bloods only’ clinics (40-50 per week), but the patient still has to attend the Trust for the blood tests, and the round trip still takes ½ day. Many people who have well-functioning kidney transplants are able to live full, busy lives – many work and have young families. They can find it difficult, disruptive and even costly to continue to attend follow-up out-patient clinics. These unnecessary appointments also consume resources that could be redirected to support patients with a greater need.
What does your project aim to achieve?
We will pilot a new way of organising clinic visits, via a software platform that allows clinicians to replace routine follow-up with that based around clinical need. The platform allows patients to submit patient-reported measures about their health. Clinicians will be able to view these and current blood results online. This will improve outcomes for patients, as they will be seen more promptly when they need to be seen, reduce the inconvenience and burden of having to travel to hospital for unnecessary care/blood tests, and reduce costs of hospital services providers. The overall aim is for the platform to automatically triage whether the patient needs to attend for clinic or not. This prioritises resources to those in clinical need. The software is also being used in radiotherapy, trialled in gastroenterology and planned in cardiology, urology and orthopaedics. There is scope to support a larger revolution in planned outpatient care that could benefit the NHS at scale.
How will the project be delivered?
The Project Board will include team members from Barts Health Trust, Kidney Care UK, Cievert and the University. Prof Thomas will have overall responsibility for the project.
The project will be split into four distinct work packages (WPs):
WP1: Project administration – will provide the overall framework for delivery of a successful project, including approvals, software service level agreement/contract, NHS IT/IG compliance
WP2: Development of patient-reported outcome/experience measures and testing. Will first be piloted with 5-10 volunteers from Kidney Care UK and will help mitigate risk of any delays within the test site. Later tested with 5 patients from the Trust.
WP3: Interfacing of blood results and software development. Cievert has significant experience in interfacing with third party NHS systems.
WP4: Data analysis, evaluation and project write up: user acceptance, clinical viability of the system/pathway if deployed at scale, economic impact for patient/provider/commissioning
What and how is your project going to share learning throughout?
The kidney community is well connected via patient associations (Kidney Care UK and the National Kidney Federation) and multi-professional associations. This team will use a successful shared learning model that was developed by another Health Foundation-funded kidney project called ShareHD. Their website https://www.shareddialysis-care.org.uk/sharehd shows what can be achieved via news, social media, blogs, films and learning events. The website will enable feedback from other interested sites (we have already had interest from other transplant units) – the feedback will be used to inform a plan on how to spread the intervention to other sites after the project has finished. One learning event for interested Trusts will be undertaken at the end of the project – it will be undertaken virtually because of the small budget. The Q Community (via special interest groups) will be included to understand how this project might translate to other clinical conditions and out-patient settings.
How you can contribute
- 1. Patient experts: do people who have received kidney transplants think this is a good idea?
- 2. Patients and professionals in kidney care: the national annual patient reported experience survey (PREM) shows that the two greatest areas of variation are shared decision making and patient transport. This intervention would reduce transport/need to travel for clinic appointments, so please add comments and support us.
- 3. Q members: please promote our work by tweeting and sharing.
- 4. Q members: this idea is transferable to other specialities and is currently being tested in oncology, gastroenterology. Please let us know of other clinical disciplines where remote monitoring and triage could be applied.
- 5. Other applicants or interested groups: please be a critical friend and send us your suggestions or comments.
- 6. Other applicants: could we learn from each other's projects?
|6 Jan 2020||Start Phase 1: Project Administration|
|31 Jan 2020||1.1 Approve project plan|
|3 Feb 2020||Start Phase 2: Clinical development and testing|
|10 Feb 2020||Start Phase 3: Interfacing and development|
|16 Mar 2020||2.1 Approvals confirmed (including DPIA)|
|23 Mar 2020||2.2 Prototype complete|
|23 Mar 2020||2.3 Software configured and tested with renal content|
|13 Apr 2020||2.4 Test content with volunteers from Kidney Care UK|
|18 May 2020||2.5 Software configured and tested with PREM/PROM content|
|3 Aug 2020||2.6 Patients from Trust recruited and using software|
|21 Sep 2020||3.1 Complete interfacing (incl. integration of PatientView)|
|26 Oct 2020||Start Phase 4: Data analysis and project write up|
|30 Nov 2020||4.1 Clinical data analysis|
|30 Nov 2020||4.2 Economic data analysis|
|21 Dec 2020||4.3 Results written up|
28 May 2020
Update 28 May 2020
What have you learned so far, either from the successes you have had or from where things haven’t gone to plan?
It has been a challenging time for everyone these past few weeks, but I am delighted to report that we are only 4 weeks behind on our planned timeline and still aim to finish the project by the end of the year. We have developed our patient-reported experience measure (PREM) based on a validated tool for kidney transplantation, with input from our two patient groups (a local Trust and a national charity). We are now almost ready to upload the PREM into the software following final feedback from our two patient groups.
We have learned that during difficult times then some aspects of quality improvement have been facilitated by the pandemic and other aspects have been hindered.
As our project is about reducing unnecessary out-patient appointment, the project has been warmly received by stakeholders who can now see the immediate benefit. Our patient group is in the ‘highly vulnerable’ category, as they need to shield because of immunosuppression. Although these are tough times for individuals because they are shielding at home, they are very happy and have the time to contribute to the project.
Approval to start the project in the local Trust has been slow, mostly because our project was not far enough forward to get immediate approval (as other COVID-19 projects), yet we are hopeful that our project will help inform the Trust strategic plan for out-patient care in the longer term. The strategic plan might mean that ‘check-ups’ are undertaken virtually, informed by the PREM, every 1-2 months, but an ‘annual review’ would be face-to-face but supported by patients completing the PREM before the visit. We have a contingency plan in place to test the software with volunteers outside the NHS until we have Trust approval.
What could others learn from your experience of working with a range of stakeholders and collaborating across boundaries (geographical, professional, sector) – including what is working well and any challenges you have faced?
We have worked well together as a team, and we have managed to have regular meetings (mostly every month), which in the latter weeks have been virtual. It has been interesting for clinicians to work with a software developer. We have been very pleased to have a new member of our team from the Health Foundation who has guided our thoughts on evaluation. We would really recommend this additional support to other QExchange project teams, as it brings another perspective and helps us see more clearly how our project can be evaluated.
Because of COVID19 we have not had as much contact with other QExchange teams as we would have liked. We have had interest in our project from other transplant teams in Trusts, but we have not been able to share our learning more widely. We will try and do this in the latter part of this project.
6 Jan 2020 Start Phase 1: Project Administration Complete
31 Jan 2020 1.1 Approve project plan Complete
3 Feb 2020 Start Phase 2: Clinical development and testing Complete
10 Feb 2020 Start Phase 3: Interfacing and development In progress
16 Mar 2020 2.1 Approvals confirmed (including DPIA) In progress
23 Mar 2020 2.2 Prototype (first draft) complete Complete
23 Mar 2020 2.3 Software configured and tested with renal content In progress
13 Apr 2020 2.4 Test content with volunteers from Kidney Care UK In progress
18 May 2020 2.5 Software configured and tested with PREM/PROM content About to start