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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

Plan timeline

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

Project updates

  • 22 Jul 2020

    Project Summary

    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.

Comments

  1. Congratulations on short-listing

    Fantastic to see health literacy being addressed and patient information modalities being evaluated

    Materials might influence

    • Resource uptake
    • Patient understanding
    • Patient engagement in decision making
    • Adherence

    Looking forward to seeing results

  2. Congratulations on being short listed

    Great idea with could be transferred to other groups . I would be delighted to support

    Best wishes

    Susan

  3. Guest

    Nicola Thomas 11 months, 4 weeks ago

    Very happy to share graphics we developed for the East London Community Kidney Service educational materials. I can send by email if that would help

    1. Guest

      That would be wonderful

      thankyou

  4. We have uploaded a video which we hope helps you understand our idea further

     

    We'd love to have your comments

  5. We would really love to hear your thoughts on our idea

    A new infographic has been uploaded to help bring the whole idea to life

    We really think this will be something that is not only going to be important for those with chronic kidney disease but the learning and approach will be pretty much applicable to all

  6. This is a really important area; we are trying to improve access for patients to the information and knowledge to allow them to self manage in respiratory disease in Gloucestershire, particularly through Pulmonary Rehab and innovative approaches to delivering this and improve uptake.  One real barrier has been a resistance from patients to digital approaches.

    It will be interesting to hear what the patient uptake for the digital versions of your self management materials is and their subsequent use.

    Do you have a feel for any patient preferences at this early stage?

    1. Hi

      Thankyou for your comments - it is a real mixture - young and old have different wants and not necessarily as one might expect or think... and I think it is just that which makes this such an interesting and important area to research

      It would be good to keep in touch

  7. Sounds great! However it is not clear whether you have true patient involvement in development of the immersive intervention....you mention the company but not any patient group. Also it seems hugely ambitious to evaluate through both qual and quantitative data for this small scale project. Not sure you have the time (or the money) to undertake meaningful qualitative evaluation. Good luck!

    1. Hi Nicola – thanks for your message. In terms of the immersive intervention – this will be information repurposed from existing leaflet information that was co-created with patient groups. Cognitant also do their own research with patient groups about how they best deliver immersive information.

      Initially we plan to test the intervention in a small pilot of 90 patients, to ascertain the best way to present the information. This will give us data to plan a much larger project to test the ideal intervention on a larger scale across the CCG – this is where we intend to look at impact on number of face to face referrals.

  8. Good to see you on here, Dr Vaux!  Great stuff as we know that patients will need new information and new skills if the traditional model of outpatients is to change.

    What would you expect patients to do differently as a result of this information?  How will you know that they've made the necessary shift?  Would you expect any particular clinical measures to change?

     

    1. Hi Sarah, thanks for your message. We hope that as result patients will better understand Chronic Kidney Disease but more importantly what they can do to slow progression of the disease – for example, through changes in lifestyle. We will also cover in the curriculum the symptoms that indicate deterioration so patients can be better informed to when to seek help.

      Initially this will be a small pilot to better understand how patients want to receive information about their health. This will give us data to plan a much larger project to test the ideal intervention on a larger scale across the CCG – this is where we intend to look at impact on number of face to face referrals.

  9. Hi Emma and Sarah

    A really interesting idea and I'm personally a fan of animations, this suits my learning style. I guess the interesting thing here will be that everyone is different; some people do  visual, others auditory, others written material. So it may be difficult to judge effectiveness fully.

     

    In terms of the theme itself, how do you anticipate this would make a difference in outpatients, as it's not quite an alternative model for outpatients? Is your aim, for example, that consultations might be shorter or reduced need for FU because patients have become more knowledgeable about their condition?

     

    My other question was about diversity and how this will be factored in to your three different methods?

     

    Good luck with the proposal.

     

    Dimple

     

    1. Hi Dimple, thanks for your message – we have already done a huge amount on how we work differently in outpatients with reducing face to face contacts, virtual appointments, telephone clinics, one stop clinics and soon to be by NHS Attend Anywhere. Healthcare professional across our ICP are now working differently but we realise through this extensive experience the big missing part of the jigsaw is how we partner with our patients both in how they navigate this new world and also how they can access the information they want, and we want them to have, in different formats that suit them. In the same way that we are seeing and interacting with patients differently, how patients can get their hands on information and in the way they want to will need to be different and it is how we can accommodate that within the system. The aim is also for patients to have different opportunities to become more knowledgeable about their condition and better equipped to self-manage.

      With regards to diversity – the animated avatars we create can be made to speak in different languages and use avatars of all different cultures, we expect this to be more inclusive than traditional written health information leaflets.

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