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Meet the team

Also:

  • Dr Raj Thuraisingham, Barts Health NHS Trust
  • Chris Kennelly, Cievert Ltd
  • Alex Blakoe, Cievert Ltd

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?

Plan timeline

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

Project updates

  • 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.

    Facilitators
    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.

    Barriers
    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.

    Timeline

    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

Comments

  1. I love this idea, patient time is the most important currency in health care. In Gloucestershire we do a lot of 'advice and guidance' between primary and secondary care, now including dermatology photos which saves time. Your bid is a big step on from that as it involves patients in the process and is more about active / dynamic management of care. Like you say, it is applicable to other areas of care delivery.

    1. Guest

      Nicola Thomas 1 year, 1 month ago

      Thank you so much! Yes, we are really committed to this project especially as so many people with kidney disease (and other conditions) have said how precious time is wasted in travelling to hospital, often for the clinician to say yes all fine, see you in 6 months!

  2. I do think this is a brilliant idea. I live in rural Cumbria, and through our Integrated Care Communities, we are trying to improve exactly the same type of journey, but in different specialisms, which I do not always understand, as I am not a clinician.

    I think it is so good that your patients can carry on with normal life through your innovations. It is only when you clock up the hours that you realise what a great amount of patient time (and associated family members) is involved.

    Great for patients and families.

    Thank you

    Sue

    1. Guest

      Dear Team,

      The problem for a while has been that    patients and carers often find themselves up against several issues across health and social care. There is a lack of integration between systems and technologies, health sectors and/ or wider understanding or misinformation surrounding Renal Disease - this is perhaps more evident in Primary care vs. Secondary care....and of course, nothing new.

      The RPSG has been a platform supporting Renal Patients for a decade - the problems patients and carers face are varied and wide when it comes down to health literacy as well. The RPSG team has sought to ensure and campaign that there is information across health practices.

      However, in particular EPRs have limitations. There has not been much unity between information patients or carers (i.e what they need to know vs.what is needs to be displayed).

      The work being proposed here is admirable but it’s as if the foundation issues relating to this long term condition are still yet to be addressed. It would be fantastic to see more integrated care between sectors.

      Much like T2DM, hypertension and other long term conditions - primary care must see Renal Disease as a similar Lifestyle Medicine issue and thus give it the same prominence.

      Thank you.

    2. Thank you so much for your supportive comments. We really do hope that our work in kidney care can be spread to other areas.

  3. Guest

    Christian Subbe 1 year, 1 month ago

    I am not sure whether I understood this - but it seems to be not very ambitious: There is little to start today to do most of this within existing platforms and there is evidence for it - especially in care of patients with renal failure.

    1. Guest

      Think that is because Renal failure has never really been given same prominence other long term conditions supported in primary care. However, if such initiative is taken then there is (at least) some scope to raise that awareness in future practice/ work.

    2. Thank you Christian for taking the time to read about our project. You say it is not very ambitious but as far as I'm aware there is only one other project that is testing the use of PROMs/PREMs in kidney care to give the patient perspective on whether they need to come to clinic or not. Our main hurdles are 1) see if bloods taken away from the tertiary hospital and nearer to home can be integrated into the platform, and 2) to integrate Patientview into the platform as well. Hope that helps!

  4. Really exciting to see this idea being taken forward in Renal it makes such sense and will be such a benefit to all type of patients as well as allowing the services to focus energy most appropriately.  Really happy to help and support with our experience from SHAREHD you know where to find me.

    1. Thank you Sonia, much appreciated. Fingers crossed for the voting!

  5. I could help with some process mapping. I can put the maps on-line for iterative improvement cycles.

    1. Thank you for your encouraging words. Lets be in touch if we are successful!

  6. Guest

    Nicola Thomas 1 year, 1 month ago

    Encouraging comment from Twitter “Exciting project. This will have a huge impact those patients who are well following from their kidney transplant- will be keeping a watchful eye on how this progresses.”

  7. Great idea. The renal team at South Tees have been testing this approach for their patients. If the project goes ahead I'd be happy to put you in touch if this would be helpful.

    1. Guest

      Nicola Thomas 1 year, 1 month ago

      Apologies I missed your reply in all the run-up to the deadline! Thanks very much - we will be in touch if successful 😀

  8. I think this is a really interesting idea and I look forward to seeing how well it works. I run a transplant clinic where patients have bloods done locally before the clinic and in general they are very happy with this (and it means the bloods are accurately timed for CNI levels). About a third have 'bloods only' and receive a letter to confirm all is ok: this works so well that it is not uncommon for patients to request their attendance is converted into a 'bloods only' as they've seen all is ok on Patient View and have no problems. I think some good software will make this a much more reliable process. Good luck.

    1. Thank you so much Aroon  - I think we worked together at some point, maybe at Barts? Anyway, thanks for your helpful suggestions about 'bloods only' clinics, which is our intention. In addition, the idea here is for patients to also upload PROMs/PREMs to make the decision about whether to attend or not becomes even more patient-centred. Our challenge is to get it all to work via PatientView!

  9. Guest

    Neil Turner 1 year, 5 months ago

    I think the comments about remote consultations working well *if you already know each other* are important. There is good evidence already that is good for doing well - and it's a strongly recurrent them in patient comments.

    In many regions, but not all, GP-taken samples are automatically fed into PatientView already - so that is possible now. But if you have to go to GP to get your creatinine and Tac measured, you now have two appointments instead of 1 - but less travelling, which for many is a major time-consumer and frustration. And knowing the result before the consultation is particularly valuable in transplant follow-up. And if you know each other, and the results are good, maybe some (alternate?) appointments can be electronic messages.

    The savings in expert clinician time are probably limited though - you still have to look at the notes, history etc, and consultations may well be no shorter. Sometimes they may lead to 'I need to see you'. (or your GP does)

    It will save carbon, and that's good too. Overall, well worth some trials.

    1. Guest

      Interesting. To be honest - long time coming. Probably more appropriate for patients whose renal function is stable.

      Like @Neil mentions - patients will be required to know their results before the consultation (which is available via PV). However, those results will be from patient's last appointment, so somewhat 'old'. Some patients do not go into their PV records for sometime, so that could be another element that needs understanding. However, still important for monitoring purposes. Also, yes - particularly valuable in transplant follow-up, saving patient time and energy where travelling could be a challenge. Equally, might be interesting to see whether the same opportunity lies for patients undertaking other forms of RRT.

      The NHS has struggled for sometime to integrate POCT systems via GPs practices, so that any results from those technologies are immediately transferrable to patient's electronic health records. The results are not always immediately viable or transferrable. Another element is ensuring Health Literacy is adequate so patients themselves can prompt any specific issues using the same terminology as professionals (where applicable).

      Virtual clinics and e-health - all good ideas. RPSG has been involved in peer support and education surrounding renal care for over a decade, and it is quite transparent that technology does have an overall role in the above regards. Therefore, many other elements that draw into this and it also depends on uptake of technology and digital transformation partnerships, across health and social care, respectively.

      Working collaboratively between patient groups, systems and between sectors to improve healthcare for renal patients (who are, at present 'unpeople') should be something we all strive toward. RPSG team always around, if you need us.

      Best.
      RPSG

  10. More from Twitter “We are using video consultations very successfully.

    Reduces  need to come on site, more convenient to patient who can access in various locations to suit them, easier for relatives/carers to attend also!”

  11. More comments from Twitter “I'd say virtual appointments for those who are well with stable graft function. some other specialties also run a patient initiated f/u service - not inconceivable to run this for some of the transplant population who use renal patient view, perhaps with face to face occasionally”

  12. This is a great idea Nicola and I like your patient feedback via twitter. I think it is transferable to other specialties.

    1. Many thanks for taking the time to read

  13. Suggestions from patients

    “Keen on the idea of having bloods done closer to home. Happy to monitor own BP

    If there’s an issue about us seeing the results then perhaps get them done at Satellites when it’s monthly bloods.

    Can we enhance Patient View – if they had bloods closer to home, could these be pulled onto Patient View? Could we then access them (we don’t currently)

    People like having a conversation, but happy with a phone call or skype instead of clinic. Like to be able to ask questions and have them answered.

    Not keen on an APP – what does it add when they already use Patient View?”

  14. Another comment from Twitter “Was just talking to a unit about this - blood tests closer to home and before clinic appointments, face to face meetings occasionally but skype/phone appointments for stable patients would be an improvement. Would work esp well if clinician and patient already know each other.”

  15. From Twitter “... But when things aren't stable I'd suggest f2f is vital as is continuity of clinician undertaking patient assessment.”

  16. Another suggestion from Twitter “Point-of-care creatinine devices to assess kidney function at home. Uploaded to PV. Virtual clinics. Self monitoring checklists.”

  17. Lots of comments on Twitter, thank you.

    ”Utilise labs near to patients home prior to clinic appointment; tailor appointments to individual need - some patients like a face to face; don't lose sight of need for psycho-social support (which needs investment). Virtual clinics work well when things are stable..”

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