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Scaling Up Improvement

Round 2 Project Title:

To Implement and Evaluate a Programme of Shared

Haemodialysis Care (Dialysis Self-management Support)

GIFTS Ref: 7664

Lead Organisation: Sheffield Teaching Hospitals NHS Foundation Trust

Partner Organisations: Kidney Research UK, Yorkshire and Humber CLAHRC

Project lead: Martin Wilkie

Date of report: 1st October 2017

Progress Report

October 2017

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1. Abstract

2. Progress since your last report

The project remains on track (updated schedule attached) and core team has remained stable. No trusts have dropped out though, as expected, there are variable levels of implementation and attendance. Team members from trusts have tended to have a consistent core with additional staff attending to spread knowledge and enthusiasm that learning events can generate. Conferences - we have been invited to present or display posters at many events at both local, regional and national levels as follows. Where possible we have involved patient partners and other teams :

British Renal Society (May17) Nottingham, Sunderland and Core teams presented in both plenary and ‘interactive’ sessions.

Renal failure has a major impact on quality of life and survival. Most dialysis patients spend many hours every week in hospital, in an environment that currently encourages them to be passive recipients of their care, engaging little with their own treatment. Shared Haemodialysis Care (SHC) supports people who dialyse at hospital centres to be involved in their own treatment, undertaking as many tasks as they feel able to. This enhanced person-centred approach improves care experience and gives more people the confidence to choose home or self-care dialysis, which is associated with better quality of life

Led by Sheffield Teaching Hospitals NHS Foundation Trust, with evaluation by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRC) Yorkshire and Humber Region

Aims to sustain and scale-up an established regional quality improvement to extend SHC to 12 UK dialysis centres.

Evaluated using a cohort questionnaire based study (SHAREHD IRAS ID 212395) supplemented by interviews with patients, carers and staff members.

Teams of patients and staff at 12 sites participate in a series of breakthrough collaborative learning events (workshops) to test different ways of increasing patient engagement in their dialysis care.

Six wave A teams attended collaborative learning events from Jan17 onwards with the remaining teams joining the collaborative in July. Learning from waveA such as simplifying QI teaching and building in more team sharing time has been adopted for waveB teams. Key to progress has been a strong core team, robust independent evaluation, an effective program framework, as well as the growing importance of the person centred care topic. For the next period we will focus on:

sustainability at all levels recognising that local variation and ownership is critical

keeping learning events simple

increasing opportunities for collaborative teams to share with others.

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KQUIP (Yorkshire & Humber Regional Day) (Jul17) break out interactive session

Sheffield Teaching Hospitals Best Practice Conference

Renal Clinical Directors Forum (May17)

Core and Sunderland teams presented at European Dialysis and Transplant Nursing Association/European Renal Care Association

Infographic presentation at Sheffield Microsystem Coaching Academy EXPO and UK Kidney week (June17)

Home Therapies Conference (Sept17) Core, York, Sunderland and Manchester teams co-presented.

Communications - we have participated in social networking and have developed or issued a number of other articles and artefacts:

Lanyards and site tailored pull-ups for WaveB and promoted the “Not what or how but why” campaign.

“What I tell my patients” article published the Jun17 edition of the British Journal of Renal Medicine

Regular data and articles added to https://www.shareddialysis-care.org.uk. Analytics show a good spread across the globe which has been reinforced by Barcelona and Israel and Portugal advising of intentions to start Shared Care

Newsletter Jul17 issued focusing on the Research information and approach

Wolverhampton local Newspaper article published

Health Foundation Shared Care Programme Video made and published .

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Evaluation - April & July data has been collected as per protocol and planed linkage to Renal registry and Patient View systems proven. Longitudinal data is not yet available from the formal research however some sites are actively using the baseline data to determine where to focus their tests of change. Patient Engagement Co-production has included attending the Patient Leadership Summit, linking with other/wider patient groups to create terms of reference for a patient partnership forum, visiting a HIPQUIP event plus directional discussions with Annie Laverty.

Learning event feedback said its “excellent to have champion patients here” but we recognise that simply attending events does not equal co-production. A mind-set change for patients, nurses and clinicians to work in partnership is also wider than specifically shared care however some examples are emerging where change is happening eg this poster redesign.

Before After

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General Logistic/planning

Learning Events sessions and conferences including transport for teams

Running Program Boards, EAG, A&DB including setting agendas, meetings minutes. All boards have used teleconference facilities/ZOOM to allow remote participation and screen sharing.

Generic Shared Care Driver Diagram produced from learning event and KQUIP input .

Supported John Illingworth (HF) for his work on Spread.

Piloted 1 day Managers course adding to the SHC education faculty

Submitted Wave 3 proposal to extend the collaborative and spread the learning

In period 4 learning events 5 action period calls. Totalling 7 events with 187 attendees 77% of whom have attended +1 event.

Many of the teams have advised of an increased ‘buzz’ within the staff who now actively want to be part of the movement. We recognise this is not all trusts and not all units within each trust so intend to focus our efforts on teams who need that support.

A number of patients have been encouraged to conduct shared care, an example is Nargis Khan who participated in the HF video and is now actually dialysing at home. Introducing QI is challenging for the majority of teams who can be put off by QI methodology and find it overwhelming. We have tried to minimise formal teaching to make QI intuitive and simple not prescribed/rigorous. We have found that teams value most the open sharing within the collaborative. We request and act on feedback to make the events fun and energising recognising the QI learning that “Failure is OK” if you adapt and learn. This honest reflection we have tried to build into teams PDSA study phases as culturally failure is still seen as bad.

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We have been encouraged that this is working with comments from the last event “we all thought [this] was one of the best so far” are however what is harder to achieve is maintaining that energy and collaboration between events. Some examples of PDSAs and measurement charts from trusts are below. We are intending to evolve measurement learning for the audience to recognise local benefits and not see it as “governance”.

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the assessment below is the average of all core team members individual scorings.

1 2 3 4 5 6 7.4 8 9 10 11

*Please bold or highlight the relevant score in the table above.

3. Next six months

Key Activities Setup Wave 3: We have been given agreement in principle to running a 3rd wave that is proposed to run July18 – Dec18. Once final details of deliverables are agreed with the Health Foundation we will progress with 6 further trusts necessary formal engagements. Joint learning events are planned 22 November, 23 January and 29 March. Additional support via Action Period Calls (APCs) are planned every 3 weeks. We recognise that this type of meeting is still unfamiliar to many of the teams and finding time to attend either individually or as a team has proven difficult. Concerns such as having to wait too long to hear constructive comments from units were voiced but once teams have experienced the calls they advised that “sharing ideas” and being able to see the test “used in their world” is really useful. We will look for ways to develop this as 12 teams on a single hour long call is likely to fail. Drop in surgery sessions and/or pre-planned 121 call/meetings will be offered. We need to ensure that both the fully engaged and the quieter teams are supported in between learning events and the learning from both is disseminated to the collaborative. Other activities including Dissemination :

Presentation at National Kidney Federation (Patients Forum) on the 14th October

Patient first Conference – HQiP Theatre 21st November - abstract submitted.

Spread - Invited to run SHC training day 27th Oct, Derry N Ireland

Publish the Protocol paper in BMC Nephrology (currently awaiting editorial decision as to when it will be published).

Publicise the ‘All hands Event” 4th July @LeedsMarriot

Potential article in BJRM about how to engage patients in co-productions the highs and the lows.

Stakeholder Engagement - continued planning execution and write-up of the following

Board meetings (6 weekly)

Advisory & Dissemination board

Evaluation Advisory Board

D4D workshop to understand what patients want from enhanced technology

SHAREHD Patient Information Day Spread & Sustainability activities

Patient videos Sharing Care produced for awareness and tobe training aides for other patients. Initially covers blood pressure/pulse, needling, hand washing, temperature taking and weighing yourself. These are expected to be available publically and be as generic as possible so trusts can store them on their websites as well as point patients to them on YouTube

Working with trusts to evolve their own local Sustainability Plans and in doing so create/test the local sustainability template

7.4

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Share, test and evolve the SHC Toolkit/Roadmap

Linking with ‘Dialysis@home’ pilot study (local grant funded study) exploring the barriers to dialysing at home (currently going through ethics approvals)

Core team to support the review of RA/HD Guidelines (Damien Ashby) and NICE guidelines (Andrew Mooney) to ensure that Shared Care gets appropriate inclusions to embed into formal governance.

4. Learning since your last report

Key Learning We have recognised that Shared Care is a culture change movement. How to effect that change needs individualising to fit within local contexts of staff, methods, and environmental pressures/priorities as-well-as fitting with Trust and NHS direction tobe sustainable. The overarching approach to programme structure, evaluation and learning events has not changed but this recognition has influenced the content to teach less, share more, to include patient stories (Maddy Warren) as-well-as disseminating messages widely such as #whyidosharedcare. We have had a policy of taking specific action to better understand engagement problems that teams are having inorder to proactively find solutions with them – eg site visits, specific teleconference and detailed discussion. Despite this, engagement has been sporadic in 2 of the 12 teams. We have recognised that with multiple initiatives ongoing many sites struggle to motivate staff to support SHC therefore a key step is “to engage motivate and inspire” the staff in doing SHC with patients which is not always straight forward. We know that trusts need to find ways in their units where SHC “frees me up to concentrate on other aspects of patient care”. To explore this we ran an interactive ‘deep dive’ discussion session for teams to share/celebrate how they have found ways to ‘create time’ and discuss new ideas to try locally. Challenges & Risks Continued engagement of patients in co-production and maintaining them at the heart of all we do is difficult as we recognise that in the HD context patients have many personal constraints. It is also another challenge and culture change for staff to actively seek patient input and for patients to be confident to give help when asked to improve a medical service. Teams have asked for “genuine patient involvement” and “more patient feedback about how to do Shared Care” therefore we have established a patient focus group as part of the learning events which we hope will go some way towards this.

Impartially involving commercial partners was never going to be easy hence engaging a third-party (D4D) to structure and lead this stream. Following a successful initial meeting a regular meeting cadence has not been established. This maybe due to asking for administration funding or reluctance to share commercially. We continue to seek ways to establish a working forum. There are good examples of individual commercial engagement eg Baxter supporting the manager course, BBraun supporting the 4 day course and Nxstage

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actively supporting the HomeHD programs. We know that notice is being taken of SHC as a recent market research request to collaborative trusts was commissioned independently and new dialysis service contracts are including KPIs for SHC. These are positive signs that commercial organisations are building Shared Care into their service offerings. Securing website long term ownership and its single point of failure continues to be a risk that mitigations have not resolved. Permanent ownership/hosting is actively being sought. Enablers – People or contextual The use of dendrograms appears useful to identify training links. We will be building on this as more data and dendrogram analysis takes place. Establishing a formal research portfolio and data gathering through the research nurses though difficult initially has proved effective as the work is built into trusts schedules. Also we follow up when things do not going as expected to learn why as a formal deviation has to be submitted. Unintended learning / consequences and their impact A hacking attack stopped TNT collections for several weeks due to database corruption. Alternative methods to minimise data input delays included scanning in questionnaires and sending via secure email and registered post. These are now backup plans. Many teams on the ground struggle with the QI concept and how to use it within day to day working. We need to make it bite sized and find ways of people at the front line seeing benefit and feeling the value. Teams need to know their rapid tests of change actually help but as its new and an additional workload it can easily suffer and be skipped over. Some trusts involved QI specialists within their teams which allows each role to contribute their expertise areas and QI to be dymistified. Notwithstanding the above there are examples where the QI learning is reaping rewards. A delegate explained how, when taking over a new unit, she is drawing from the experience of the collaborative knowing that small incremental changes will eventually lead to substantial improvement. Formal PDSAs may not be being completed but the continuous improvement approach is being adopted. Sustainability We have learnt that sustainability covers a number of elements (see mind-map) it is not something that starts or will finish within the timeframe of the program therefore we are focusing on the specifics actions that can be achieved within the program boundaries.

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Questions such as “How to commission choice” and “How do you measure culture change?” are not within the specific remit of the program but are necessary to achieving any measurable sustainability. We intend to draw on the levers of health governance by being involved in the evaluation of the RA and NICE guidelines to ensure that these questions and shared care are addressed.

5. Evaluation – To be completed in addition to interim evaluation

report

From a project management perspective the evaluation work is mostly on track, there are no changes to budget and no substantive changes to the intervention or evaluation plan. One area of delay has been a need for an ethics amendment to cover the economic evaluation approach as this was more detailed than originally identified in the approved protocol. Also the gaining of research passports and letters of access, particularly for the researcher employed for the statistical and health economics support. However, the planned work is still comfortably achievable within the remaining time, and there are no concurrent scheduling difficulties. Initially, focus groups with key stakeholders to develop the initial programme theories were proposed. However, the level of engagement required was not possible to arrange . We addressed this by using the programme ‘Watsapp’ group to distribute questions and receive prompt responses. We also have access to a ‘facebook’ group of shared care dialysis nurses for specific questions and initial theory testing/validation. Recruitment and retention of sites and patients is well within the predicted range. We have not experienced any significant barriers or challenges. A potential problem regarding completeness of data at a critical time-point (with the onset of the intervention for the second wave) was recognised and examination of the received data

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indicated specific sites that could be at risk in terms of late or missing data. Potential problems in analysing the data for primary and secondary outcomes could have resulted so sites were prompted to ensure that the required data were delivered on time. This potential problem was thus avoided. We have had need to submit deviations from the protocol following some anomalies with a sites data collection. Where this has occurred we took the opportunity to visit and understand what the factors were that caused the variance. This was very insightful as not only were lessons gained to further improve protocol design but also gave opportunity to reiterate why actions needed to be completed as per protocol to not invalidate research findings. We recognised that some of the QI messages ie that you can be flexible and local in how you implement change are contrary to that required of research rigor and that this may cause confusion where the research and QI teams are merged. We were pleased that we had separated the research to be gathered by research nurses which has minimised this confusion and would be a recommendation to future linked QI/Research projects. There have been no major concerns raised by the Evaluation Advisory Group. However, membership/attendance of the EAG could be improved upon which will be discussed in forum. The key issue on the risk register is the possibility that HES linkage data could be problematic to obtain within the correct time-window to inform the analysis. Please find the updated risk register within this report. Apart from issues listed above, there are no significant areas of the planning, designing and managing of the evaluation that would have been done differently.

6. Resources / outputs to share

Project management Artefacts

RAID log

Lessons learnt log

Schedule

Cost model

Latest program board minutes

Latest EAG/A&DB minutes

Pop-up approach and resultant messages run at the BRS conference.

Conference schedule

Evaluation data and QI

Data slide decks (see interim evaluation report)

Learning Event and APC write-ups

Generic Driver diagram

Sustainability plan template

Sample Trust PDSA forms

Detail of conferences attended

Articles / letters

What I tell my patients – British Journal of renal medicine June 2017 edition

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July SHAREHD Newsletter

Wolverhampton Shared care Article in Wolverhampton Gazette

HF Program Video https://www.youtube.com/watch?v=uexo0zE6rpM

Website marketplace updates and inclusions for teams (within the programme or outside) to download and use themselves. https://www.shareddialysis-care.org.uk/shared-care

Infographic poster

6* Wave B pull ups Photograph

7. Finance update

Please find attached updated spread sheet with commentary on variances indicated. This spreadsheet includes the additional Wave 3 projected expenditure.

8. Additional information and feedback to the Health Foundation

Dealing with and Celebrating Local Variation We have noticed considerable variability between scaling up teams but have made the conscious decision not to push too hard and let trusts find their own path. Feedback from teams who have sent many participants to the learning events regarding the collaborative include “people now realise its not just me saying to do it - its wider” (Heart of England) and “we want other attendees to have the opportunity to come as they want to be part of the

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buzz” (Stevenage). Which is very encouraging however other teams send fewer members or members change from event to event. We would very much welcome any ideas how to encourage those who are less engaged. Each team has gone about QI differently. We want to celebrate what they have done and show the diversity. We are considering having a competition within the July 4th 2018 event where each team presents its best ideas and these can be ranked and a prize given for the best, most impactful, simplest. They can also be included in the toolkit/roadmap and highlighted as ‘SHAREHD award winners’. Culture change The Shared Care culture change started before and will need to go on past the formal program end. However we realise that in addition to the culture change of Shared Care that teams also need to deal with the culture change of patient co-production and use of QI within their day to day roles which makes the burden of change significant especially if teams have other environmental pressures. Any recommendations how to support teams would be welcomed. Sustainability SHAREHD timline is a finite therefore we must focus on what we can do to promote sustainability within the timeframe available and stick to that boundary. We cannot achieve sustainability itself but we can create building blocks to promote and help sustainability to occur. Your support and guidance as to how to maintain this focus would be welcomed. Spread Alongside the aligned nurses course a new managers course has been piloted with excellent feedback that we expect to become part of the Shared Care “faculty”. Via the 3rd wave we hope to establish an additional ‘trust level’ training layer to become part of that offering. Any links to examples where this growth of associated tier learning has been adopted would be useful experience to learn from whilst we continue to evolve this concept. Also longer term ownership and funding for this faculty that needs to be kept together to gain the synergies would be welcomed. In addition following the presentations at EDTNA we have been advised that Barcelona is looking to start implementing Shared Care and Israel also is sending staff to the nurses course. We found that Denmark are already adopting the approach and presented their findings at EDTNA also They sited using and adopting tools from the Shared Care website which proves that local trusts or countries can adopt the approach so long as they have the desire. It also reinforces the importance of our websites and social media and is supremely rewarding to see posted ideas being adopted and locally adapted with minimal intervention form the core team. Links with these teams and locations has been made via the nurses FACEBOOK to both broaden the collaborative and give them support in progressing their journey. We believe and hope you will agree and help us to support these start-ups by maintaining shared care aka patient centred care, in the public consciousness.