Q Exchange
Interactive knowledge and resource hub to promote home dialysis uptake
- Proposal
- 2024
Meet the team
Also:
- Dr Rosie Donne, Consultant Nephrologist, Salford.
- Hilary Corwin, UK Kidney Association
- Gerogina Hamill, UK Kidney Association
- Katherine Elson, UK Kidney Association
What is the challenge your project is going to address and how does it connect to the theme of 'How can we improve across system boundaries?
Renal GIRFT recommends that all centres should aim for 20 % of dialysis patients to be on home dialysis. The DAYLife ( Dialysis at Yours: Life Fulfilled) is a national quality improvement initiative across 52 centres in England and the devolved nations to promote home dialysis uptake. We have held patient and leadership events nationally in 2023 to identify the challenges and areas for improvement. Staff confidence and knowledge around home dialysis , peer support and QI training have been identified as important barriers. The Renal Service transformation plan has recommended collaborative working within renal networks to share learning and best practice. However there is no existing platform to facilitate this and centres continue to work in silos trying to address the common challenges leading to duplication of effort and resources. During the national events, feedback from professionals across the UK recommended development of a central resource hub that will overcome these issues and facilitate collaboration.
What does your project aim to achieve?
To establish a knowledge platform for professionals engaged in home dialysis quality improvement programme. The platform will provide a repository of published evidence of QI initiatives; Share resources for care professionals developed as part of the DAYLife initiative; Signpost patient information resources on home dialysis developed by other NHS and charitable organisations; Enable care professionals to provide real time update on their QI projects using a standardised QI template through the platform to improve visibility of the projects and early dissemination of any learning and successful change ideas; Provide an interactive space for care professionals to connect with each other, develop a sense of shared purpose, establish a community of practice on home dialysis, discuss challenges and solutions, collaborate on QI projects involving the same patient pathway and develop common resources that can be used by more than one centre within a renal network.
How will the project be delivered?
The project will be delivered by the Kidney Quality Improvement Partnership (KQIP) team leading the DAYLife programme under the auspices of the UK Kidney Association( UKKA). The knowledge platform will be set up within the KQIP page of UKKA website. ‘.
Focus groups of care professionals will be held to identify what resources are needed and how they need to be presented to make it impactful and user friendly. There will be options for users to feedback through the platform real time following the initial set up. The feedback will be monitored and the platform will be adapted accordingly.
The resources within the platform will be freely available and accessible to the wider community both within and outside renal specialities. All centres joining the DAYLife programme will required to create an account to access the interactive space to provide project updates and to be able to connect with other professionals.
How is your project going to share learning?
This will demonstrate the potential to establish an interactive real time central knowledge and resource hub to support multiple centres and clinical teams who are involved in the same QI initiative. This platform could be easily adopted and directly transferable to other regional or national QI initiatives within a single disease specific speciality or across system boundaries involving primary care, community sector and secondary care. This will also enable development of a community of practice who champion the cause within each centre and network and to train other incoming health care professionals to ensure the learning and the benefits from the initial programme are sustained.
The impact of the hub will be evaluated through number of people accessing the hub, feedback captured from users when they access the hub as well as identifying themes emerging through the discussion forums that connect health care professionals.
How you can contribute
- Examples of any such knowledge platform used that is also interactive and facilitates networking amongst care professionals
- Any suggestions on getting user feedback on the platform beyond focus groups and individual feedback through the platform
- Examples of QI template document that can be integrated into this platform for real time project updates
- Ways to publicise the platform widely and maintain engagement with the full range of multidisciplinary healthcare professionals who may benefit from using it.
Plan timeline
| 1 Jul 2024 | Project team meeting to scope, discuss responsibilities and identify stakeholders |
|---|---|
| 1 Aug 2024 | Focus groups with stakeholders to understand user needs |
| 1 Sep 2024 | Initial development of the platform with feedback from focus groups |
| 1 Nov 2024 | Focus groups to test and feedback on the platform |
| 1 Dec 2024 | Knowledge hub goes live with ability to capture user feedback |
| 1 Mar 2025 | Ongoing adaptations to finalise knowledge hub based on user feedback |
| 1 May 2025 | Evaluation of the impact of the knowledge hub |
| 1 Jun 2025 | Project report and write up for publication |
Comments
Sahana Rao 19 Mar 2024
This is a brilliant project!
It would be hugely beneficial to the patients on dialysis, and their families.
How would you evaluate the impact of this program?
udaya udayaraj 19 Mar 2024
Dear Sahana
Thank you for your comments. We intend to evaluate the impact by monitoring the number of people accessing the hub each week; through short user feedback survey when they access the hub; following the thread within the discussion forum to assess the impact of those discussions on change in clinical practice and how it influenced QI projects; through focus groups in the first year and a more detailed online survey of users at the end of the first year of the project.
Thanks
uday
Anna Burhouse 5 Mar 2024
Dear Uday,
I think this looks like a great idea and would build on the amazing work done at Sheffield Teaching Hospital called Shared HD which was part of a Health Foundation Scaling Up programme. They have developed some great insights and tools which can be accessed here: shareddialysis-care.org.uk
Hope that's a useful link and I wish you lots of luck :)
best wishes
Anna
Udaya Udayaraj 5 Mar 2024
Dear Anna
Thank you for your feedback and support. The DAYLife programme has 4 work streams : Shared haemodialysis care, Shared decision making and predialysis education, patient peer support, psychosocial support. Tania Barnes and Martin Wilkie who led the Sheffield initiative are members of the Shared care working group within DAYLife and we will be signposting their resources within the DAYLIfe knowledge hub. The hub also would in addition provide similar resources for the other work streams and include an interactive platform to develop a community of practice.
best wishes
uday
Hilda Campbell MBE 4 Mar 2024
This looks a great idea and working with others to explore and share learning makes sense. I wonder if you are also thinking about focus groups for unpaid carers? Depending on the needs and ability of someone receiving home dialysis this may be another pressure on carers who may already be struggling, also, has thoughts went into costs for using the equipment at home? The cost of living crisis means many are struggling. I am sure there will be assessments around suitability for home dialysis to make sure people are able to do this themselves if they don't have someone at home to help, I wonder is a financial assessment also part of this, linking to money advice services where needed?
The idea of a central knowledge resource hub makes real sense as it can be a 'go to place' to share learning, promote new developments, raise awareness of training. I wonder also will it have a dimension can be accessed by the public including carers? sharing thoughts and ideas from other people with lived experience and peer support groups.
Building a network and communities of practice will help support engagement and also ensure the direction of travel reflects the needs of stakeholders, in whatever role they have.
There are real opportunities that learning here can be shared with others also exploring ideas for more treatments to be delivered at home. The cross fertilisation of ideas can also help stop the wheel being reinvented and instead use energy towards improving the wheel that already exists.
There is also maybe something here around confidence building and wellbeing, my background is mental health and I feel it is worth always considering the various elements of the human psyche when approaching something new, dealing with change, worry about applying learning. We live in a culture where fear can be a real challenge for many, even when they know they are doing the right thing, their mind can play over and over the possible errors they worry may occur. This is why in any community of practice there needs to be a psychologically safe space for professionals to explore not only what went well, but what could have been better.
Mental health, co design and production, engaging the voices of lived experience, nurturing networks and network leaders and staff wellbeing, are more my skill set than clinical interventions at home, but if I can help, please get in touch. My direct email is hilda@cope-scotland.org
Kind regards
Hilda
Udaya Udayaraj 5 Mar 2024
Dear Hilda
Thank you for your feedback and very helpful comments. Patient peer support and psychosocial support are 2 important work streams within DAYLife programme. As you say, it is important to ensure the voices of those living with kidney disease is heard. We have co-designed the DAYLife programme with patients and partners in the first year of the programme through patient and leadership events. There are several patient resources that have been developed by patient charitable organisations ( Kidney Care UK, National Kidney Federation) for patients on home dialysis including financial support and claiming financial expenses to do home dialysis which we will be signposting from within the platform. The scope of this projects will initially be to develop resources and sharing learning for healthcare professionals and facilitate networking. The next phase of the project could be working with patients and kidney charitable organisations to understand the need and demand for developing patient specific resources around peer support and psychosocial support.
Thank you for your offer of support to provide guidance and will be in touch when we are developing the hub and establishing the networks.
best wishes
uday
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