Meet the team
Consultant Nephrologist & Physican
Royal Berkshire NHS Foundation Trust
- England - Oxford
Transformation Lead Long Term Conditions
Berkshire West CCG
- England - Oxford
- Tim Ringrose
- Becca Sharman
- Heike Veldtman
- Rebecca Bowers
- Kathy Green
- Raghuv Bhasin
What is the challenge your project is going to address and how does it connect to your chosen theme?
Berkshire West ICP has made big changes, just in 18 months, in how patients with kidney disease are cared for across primary & secondary care: adopting virtual services & better supporting patients in the community. 30% new outpatient appointments are avoided & a further 40% can be managed differently providing significant financial, social and environmental benefits to the local community. (https://www.rcplondon.ac.uk/projects/outputs/outpatients-future-adding-value-through-sustainability)
We have identified an unmet need in how patients receive & access information to improve self-care. Healthcare professionals struggle to explain often complex information to patients within time-limited appointments & current practice is to give information leaflets: this becomes increasingly problematic in virtual consultations. Poorly informed patients are less likely to adhere to advice & medication, leading to poorer outcomes, poor patient satisfaction & greater cost on health service providers
What does your project aim to achieve?
European health literacy survey states 47% adults have “insufficient” or “problematic” health literacy, whilst 61% people with “limited” health literacy have >1 long term health condition
Restructuring outpatients has identified a gap. The aim of this pilot is to evaluate how patients best understand & want to consume health information plus a way to deliver this information digitally. We plan to repurpose current information leaflets to test 2 new methods of delivery: text information & immersive interactive animation, both made available to patients on their mobile devices. This will be evaluated against existing printed leaflets (this written content previously co-produced with patients)
Results will help shape development & delivery of an extended programme focused on chronic kidney disease, to optimise consultations, integrate with the new model for outpatients & improve patient experience – delivering a fully holistic model to be adopted by other therapy areas and scaled nationally
How will the project be delivered?
90 CKD patients will be recruited in primary care from 2 pilot sites and will be given information in 1 of 3 formats (a printed leaflet, a digitised version of the print material or a short immersive, interactive animation either in virtual reality (VR) at the clinic or to be viewed on the patient’s smart phone or tablet)
The digitisation of patient information will be managed by Cognitant Group, a health technology company in partnership with Royal Berkshire NHS FT. It will be developed from existing materials (already co-produced with patients) & both digitised forms will be made available via an app, Healthinote, which allows clinicians to recommend information to patients via a link or QR code
Patient’s understanding of CKD will be tested before and after using the provided information using a survey. Patient’s preferred methods of delivering education will also be evaluated through questionnaires
Delivery is through our secondary and primary care renal/GP team reporting to ICP Board
What and how is your project going to share learning throughout?
Digitising the way patients can access & understand more about their condition & self management has relevance far beyond CKD.
The project aims to test out proof of concept of different approaches with adapting existing materials; the learning gained will help inform further design iteration with patients/staff/local communities & hard to reach groups
The learning will enable patients & carers to access patient information in a format that works for them in a style & content that helps them understand more about their condition & how to navigate support systems.
Any learning has wide applicability & transferability to other conditions; the wider ICP outpatient transformation programme means there’s a vehicle to support wider rollout with system healthcare partners. Sharing learning, gaining feedback & creating important links through the Q community will be through regular blog, social media, film, patient story, publication, link to other social & patient networks, live patient feedback
How you can contribute
- We would welcome feedback on our approach to test out the use of modern immersive technologies in helping to develop relevant, responsive and accessible patient information
- Have we made the connection to this important area clear enough in how this connects to our new models of outpatient care already in place? And that this approach would help strengthen what we are already doing by addressing this important gap?
- Have we got the measures right?
- What risks should we give attention to more?
- Do Q members feel that the learning gained for this group of patients could be relevant to themselves and/or their own patients?
- Could the shared learning approach be more creative?
- We are keen that this is understood to be a collaborative and co-production approach - have we made that clear enough- the patient information to be tested as already been developed with patients - beyond this initial testing phase we want patients to get involved even more in further iterations
|6 Jan 2020||Phase 1: initiation Approval of project plan (all)|
|6 Jan 2020||Phase 1: initiation Kick off meeting (project lead)|
|13 Jan 2020||Phase 2: Questionnaire Design Patient knowledge test|
|13 Jan 2020||Phase 3: Prototype dev: Content development: Storyboard solu|
|20 Jan 2020||Phase 2: Questionnaire Design Leaflet quetsionnaire|
|20 Jan 2020||Phase 3: Prototype dev: Content development:Review& approval|
|27 Jan 2020||Phase 2: Questionnaire Design Digital print questionnaire|
|27 Jan 2020||Phase 3: Prototype dev: Content development:scriptwriting|
|3 Feb 2020||Phase 2: Questionnaire Design Animation questionnaire|
|3 Feb 2020||Phase 3:Prototype dev:Content development:script edit,approv|
|10 Feb 2020||Phase 3: Prototype dev: Content development:rev& approval|
|24 Feb 2020||Phase 3: Prototyping:Prototype development: short demo clip|
|2 Mar 2020||Phase 3: Prototyping: review & approval|
|16 Mar 2020||Phase 4:Full build and implementation: technical: build|
|6 Apr 2020||Phase 4:Full build & implementation: technical:user testing|
|13 Apr 2020||Phase 4:Full build and implementation: technical: Amends|
|20 Apr 2020||Phase 4:Full build and implementation:Implement-final approv|
|20 Apr 2020||Phase 4:Full build and implementation:Implement:set up track|
|27 Apr 2020||Phase 4:Full build and implementation:Optimisation & release|
|4 May 2020||Phase 5:Roll out in pilot sites:Pilot centre training|
|11 May 2020||Phase 5:Roll out in pilot sites:patient recruitment|
|18 May 2020||Phase 5:Roll out in pilot sites:information delivery|
|10 Aug 2020||Phase 5:Roll out in pilot sites:Data collection written|
|24 Aug 2020||Phase 5:Roll out in pilot sites: Data collection Digital|
|7 Sep 2020||Phase 5: data interrogation- results analysis|
|5 Oct 2020||Phase 5: data interrogation -report creation|
|16 Nov 2020||Phase 5: data interrogation - publication|
22 Jul 2020
The aim of our project is to evaluate how patients best understand & want to consume health information. We planned to re-purpose existing Chronic Kidney Disease information leaflets to test 2 methods of information delivery: text information & immersive, interactive animated video. We also aim to test the acceptability to patients of delivering this information digitally and remotely via their smartphones, tablets and in virtual reality alongside our virtual OPD and GP consultations. We are testing patients’ preferences through a series of PREMs.
Overview to date
We are pleased to report that despite recent challenges of Covid-19 we have been able to execute our project plan to schedule. Our project kicked off in January 2020, when our first cross functional and multi-disciplinary team met to agree our project plan, begin design of the patient education resources and our evaluation questionnaires.
Since then the project team have delivered the following:
· Designed the PREMs questionnaire
· Reproduced CKD patient leaflet and optimised for delivery in digital format
· Developed the patient information leaflet into a script and storyboard for delivery using an avatar and animation techniques
· Developed a prototype of the interactive patient programme and user tested
· Developed the full programme and optimised for release
· Prepared printed materials to help patients access the resources, including the printing of cardboard VR headsets that patients can use with their own smartphones
You can see our progress for yourself by downloading the ‘Healthinote’ app for iOS or Android and entering the following 3 digit code: 844, to access the resources created for patients.
The next stage of our project is to deliver the new resources to patients and collect their feedback through questionnaires that are: in built into the app version, through an online survey monkey and through paper based surveys. We are very much looking forward to collecting these insights and sharing them the wider Q community.
What have you learned so far from the successes you have had?
Working with patients and an external supplier to create patient information resources has been very insightful. It has been very interesting to understand the differences between what medical information clinicians feel needs to be portrayed and what information patients really want to hear about. We also found that working with an external supplier with lots of experience writing medical information using patient-friendly methods helped to unlock creative ways of presenting information. This cross functional approach to design and co-creation of resources has really helped to create holistic resources that will help patients to understand their condition.
Despite having a negative impact in so many ways, Covid has highlighted that the work we have been doing to care for CKD patients without the need to come to hospital unnecessarily is all the more important. As part of this project we are testing the acceptability of patients to receive information about their condition remotely and what format that works best in. We feel this is even more crucial now due to the number of appointments across healthcare that are now being delivered remotely and we look forward to sharing our results.
And what have you learned from where things haven’t gone to plan?
We initially planned to utilise our existing patient materials to create our new resources. However, we found that on review with the cross functional team there were many changes required from both primary and secondary care perspectives and also patients themselves to make the resource more useful. For this reason, we decided to re-write and design our existing patient information for CKD as well as create the new resources so that we can compare like for like with patients.
Covid has also presented challenges in how we planned to deliver resources to patients, although we planned for many patients to be given access to the resources through SMS, it was planned that we would be sharing printed QR codes with some patients as they attended appointments. As a result of covid, we have had to look at other ways of sharing this information and have designed a resource pack that can now be shared in the post too.
What could others learn from your experience of working with a range of stakeholders and collaborating across boundaries (geographical, professional, sector)?
Working in cross functional teams can make working together more challenging, managing more diaries and conflicting priorities. However, we have found the end result is that our project has taken on a much more holistic approach as a result.
Our cross functional team had representation form primary care – 2 GPs, secondary care – consultant and matron, patients x3, the trust patient information manager and external digital health technology partner – bringing medical writing, animation and project management expertise.
Most meetings have been held face to face (pre-covid), with some virtual, and we found that good planning and scheduling diaries well in advance have been key to success. Meetings also require careful planning with clear objectives to ensure they are valuable to all attendees. We also found that it is essential to consider which attendees are need and at what stage to make sure you utilise your project team’s time effectively.