ADVISORY & DISSEMINATION BOARD

MINUTES

SCALING UP SHARED Haemodialysis CARE

Date: Friday 10th November 2017

Location: Sheffield Town Hall (Committee Room 1)

Time: 14:30 AM – 16:30AM

Attendees :
Donal O’Donoghue CHAIR
Paul Bristow
Liz Hill Smith
Sonia Lee
Andy Henwood
Tracey Young
(via Teleohone)
Martin Wilkie
Paula Ormandy
Mike Nation / Apologies:
Hilary Chapman
Valantina Karas
Eileen Hall
Becky Malby
Jon Gulliver
Tess Harris
Berni Stribling
Wendy Tindale
Item / Comment / Action
1 / Welcome and Apologies:
DoD welcomed all to the meeting. All the forum introduced themselves, 3 attendees were connected via teleconference with 6 being in the room in Sheffield.
It was commented that the number of apologies was high albeit all individuals has provided reasons and in many cases had offered to have offline conversations.
It was agreed that for the next session the audience should be reconsidered and additional interested parties potentially invited to spread the awareness and understanding. ACTION SL/MW and DoD to discuss. / 1.1 SL/MW DOD
Minutes of Previous Meetings
The following corrections were requested to the previous minutes otherwise the minutes were approved :
  • The date needs to be checked and confirmed to be 10th July.
The ‘previous actions’ table at the end of these minutes show the status of actions from the previous minutes.
3 / Programme Update – Health Foundation Status report & High level Plans and milestones in next 6 months
Key points were presented by SL as follows :
Key Achievements Since Last meeting :
  • October - Interim Evaluation Report & Progress Report for Health Foundation Issued
  • HF has authorised funding for a ‘wave 3’ of 6 trusts to be run as a single collaborative. Planned to run July–Dec 2018. Interested trusts being identified.
Communications :
  • EDTNA @ Krakow and Derby
  • 2nd Leaders presented at Manchester Dialysis Conference
  • Core Team (5 of us) Presented at the NKF (14th October)
  • Visited N. Ireland 27/10
  • Upgraded Website
  • HF video made
Learning Activities
  • First for Wave B *1
  • First full event
  • Generic Driver Diagram produced
  • Draft roadmap and toolkit
Research :
  • Next ‘Full’ data collection (October) received from sites – data being input to database.
  • Patient and Staff interviews continue
  • Commenced Economic Data collection
Sustainability
  • Mind-map and explanation of areas document produced
  • Local templates being trialed with trusts
  • Manager day course
Next 6 month Milestones
  • Continue learning events - Remaining learning events and planning for 4th July
  • Planning and selection of 3rd wave teams – trial and test the roadmap and toolkit
  • Spring conferences
  • Publish Protocol (BMC nephrology)
  • January and April data collection points , HES data request link to Dialysis@home pilot study
  • Complete all patient and Staff interviews
  • Complete Economic Data collection
  • April - Next Progress Report for Health Foundation
Discussion / Suggestions :
  • It was suggested that for the next meeting a RAG status of each team be devised for the forum to understand how the teams appear to be getting on. SL to discuss approach with MW.
  • ACTION SL to forward links to the HF video to all the forum
  • MN reminded the forum that now is the time to ‘invest to disinvest’ to be sure that the teams are ready to continue with SHAREHD one the programme itself concludes.
  • MN suggested that the use of the term ‘third wave’ may assume they are joining the existing 12 in the collaborative but that this is not the case.
  • Regarding Comms it was advised that next year World Kidney Day was on the same day as Women’s Health therefore linking to the 2 could be advantageous
  • Also next year is the 500th Anniversary of the Royal College of Physicians which may well present many renal conferences and patient perspective forums that would be good opportunities for spreading the shared Care approach.
  • Measures were discussed and what could be collected at a national level to understand the uptake of shared care and maintain its visibility across the whole kidney community. – ACTION SL/MW to discuss with DoD.
LHS suggested that for the next meeting that a summary status report be issued in advance with a short time for questions/exceptions only be included in the agenda as this will reduced the time taken and allow a greater focus on the discussion topics. / 3.1 SL/MW
3.2 SL
3.3 SL/MW/DOD
4 / Key Questions 1
“Health Ecomonics – Understanding the approach taken to determine the ecomonic implications of shared care and quality of life?”
“ is there a case to argue that NOT promoting and progressing shared Care will increase trust costs”
Tracey Young shared the SHAREHD health economic stream approach to evaluations. If the system is to sustain there need to be some measures of quality control to show the effect of the intervention.
PO advised that the cost per unit would not be the same due to multiple variables and it was also noted by the group that there is an element of self-selection that has occurred in the study and that this needs to be accommodated in the analysis. In addition the start up and running costs for each unit will be different by the nature of what their environment is and their starting point of Shared Care policies and procedures.
It was also noted that getting started in SHC is a big cost in time and effort but that this cost reduces when more staff and patients are involved and that this also does not have to only take place in centre dialysis units it can start in outpatients and continue in all clinics.
Categories of measurement were discussed such as hospital bed days however it was agreed that measures should be easily collected and understood and not be an additional burden to staff or easily manipulated.
What needs to be ascertained are consistent broad headlines that all trusts, units and stakeholders will be concerned about and to focus on a method of measuring these in financial terms.
AH asked that consideration be given in the analysis to patient training, not just by health care professionals but wider societal training also.
ACTION :All agreed to confirm any points to be raised from the interim evaluation report and forward t to SL to be posed to the evaluation lead and/or evaluation board.
Regarding dissemination of the findings –
MN wanted to know what we can start to feedback to units to show evidence rather than waiting to the full report and evaluation was completed as that would be represent a gap in activity and potentially cause some units to stop rather than strive to continuously improve.(ie “perfection is the enemy of progress”)
A timeline of activity is to be determined and circulated ACTION SL/MW / 4.1 – All
4.2 – MW/MN /SL
5 / Key Question 2 –Exploring Confidence - “How does the confidence of patients (as staff) effect involvement in sharing care? What are the barriers ?can this influence activation ?”
Andy Henword (SHAREHD patient lead) presented on what confidence meant to him.
PO suggested that giving time and respect to patients is critical to promoting confidence and that the realist evaluation should be identifying where this works well. Key is giving patients choice.
It was reminded that teaching the right skills to support patients building their confidence was very important and that MI training helps to promote these skills and confidence in staff is required.
MN felt that galvanising the patient voice to drive forward would really relevant and DOD suggested that patient stories being published would show this to great effect – perhaps each trusts should work via their KPA and tell their storey and why its important.
LHS mentioned about the progress principle and how to progress confidence with small strokes and nudges. It is very easy to knock confidence and so perhaps we should turn the lens to what builds and knocks confidence to focus on that teaching rather than specific tasks learning also.
DOD advised that we want to get to a stage where understanding individual learning styles ,(almost a personalised Myers/Briggs) is normal in considering how to work with patients as part of the team.
PO commented that this is a really valuable concept and that confidence is crucial to effective partnership. She also suggested that if patients are also depressed this can be a barrier to engagement
PB suggested whether patients actually feel part of the team at this time and whether that is something that could be concentrated on to increase patient confidence and participation.
LHS proposed whether the use of gamification could be promoted to make dialysis and learning tasks fun.
6 / AOB
DOD advised of the possibility of working with the HF to share learning from Diabetes and Cardiac areas in bringing together similar themes across co-morbidities. He was aware of how this had been successfully achieved in Australia and maybe this could be mirrored. MW/DOD to discuss.
PMN – Andy Henwood suggested that the HCP course agenda be issued for information to the board as part of the reading for the next meeting. / 6.1 MW/DOD
6.2 - SL
7 / Summary & Date of next meeting
Next meeting to be held face to face and for attendees who have not been able to make the last events to confirm if they wish to participate. Additional attendees could be sought especially from Scotland / Wales and Ireland to spread more widely.
SL to send out doodle poll and set meeting for 2.5 - 3 hours. (PMN – Doodle poll arranged DOMN – 23/4/2017 10:00-13:00. Location Sheffield TBC)
Areas to cover at next meeting was agreed to be focused on Spread and sustainability :
a)Share the Sustainability Document and local template.
b)Sharing the Proposed Roadmap / Driver Diagram and Tools
c)It was suggested by LHS and agreed that the programme update should be issued as a briefing report in advance and for exceptions / question to be raised rather than a presentation of progress. This will save time during the meeting. / 7.1 SL/DOD.MW to discuss potential additional representatives.

PREVIOUS ACTIONS

Meeting date/Section / Action / Status
9/12/16 – 3.2 / PO recommended that the Health Economic Evaluation be peer reviewed in order to ensure maximum credibility for the findings and approach. Action MW to request Evaluation team to do this. / ACTION SL/MW
27/3/17 - Request made to the team awaiting specifics of when peer review is to take place is to be agreed
10/7/17 – An amendment is being progressed to Ethics including a Poster being used to ensure patients & staff are aware of what is to happen.
It was requested that more information on the Health economics activity be brought to the ADB next time. Including what will trusts loose if they do not participate.
ONGOING
10/11 – Agenda item discussed 10/11.
Propose to be CLOSED at next meeting
27/3/17 – 4.3 / The CRG is revisiting the specifications but any outcome needs to be based on data that is already collected routinely to be successful – the use of the renal registry data was discussed. It was agreed that a feed into the clinical reference group to ensure that the priority of shared care is maintained and projected sufficiently was essential
ACTION : for a timetable of all revisions of guidelines and specs to be devised and disseminated along with contacts for updates. / 10/7/17 - Draft table initially created by SL/MW – on-going
10/11 – Table is included at the end of the Sustainability of SHARED care document – need to maintain awareness of the dates and updates to be sure that the shared care messages and measures are considered.
Board agreed to maintain this as a standing discussion item
27/3/17 – 5.2 / Produce a package/ approach that can be disseminated (PMN – This ‘roadmap’ is an output requested by the Health foundation so will be produced however it was planned to be created later in the programme – it is noted that a draft for validation may be useful to produce no learning has started that can be perhaps tested with non- engaged trusts) / 10/7/17 – SL
Draft roadmap is produced – and will start to test this with teams.
A generic SHAREHD Driver Diagram is also being created from input by all truststhis is to ensure that all tests of change link back to the overarching SHAREHD aim. Drafting and validation to continue.
Agreed To share these at the next A&DB.
On-going
10/11 – Draft roadmap is available and will be discussed at the next session.
10/7/17 – 2.1 / BS suggested that there are diabetes related conferences that would be a useful spread of the SHARED CARE message to wider long term conditions – ACTION BS to forward details / Details provided - CLOSED
10/7/17 – 2.1 / Action Update MN/PB “Health Foundation Renal Issues meeting on 27th July. MN and Ron Cullen from the renal registry attended. MN provided feedback and shared at the meeting progress being made by SHAREHD” / CLOSED
10/7/17 – 2.2 / DoD wondered how does sustainability link to the current collaborations and how can we tell if SHAREHD would sustain without them – this could be a suggested future discussion point. / SL/PB/MW to discuss approach here.
10/7/17 – 2.1 / PB advised that Fiona Loud is involved in the NICE 2 year review by Jan Dudley and that providing consensus evidence rather than ‘randomised control trial’ evidence could be pushed to be taken into greater consideration. ACTION : It is most important that we are ready to input when the document is out for consultation – perhaps a letter (perhaps signed by multiple members) could be written in response to the consultation of the NICE guidelines so as to be sure that shared care is not omitted. / NICE guidelines have not been issued however this will continue to be considered when they are available.
10/7/17 – 4.1 / DoD - The Get it Right First time Initiative may impact SHAREHD – DoD suggested that a paper be written describing why SHC is beneficial and link to data in other datasets to determine if SHC addresses unwarranted variation. / SL/MW to discuss with DoD.
Ongoing
10/7/17 – 5.1 / The group suggested that a list of barriers would be a beneficial output with mitigations identified to overcome then articulated. This could take the form of a Risk register with consequences and likelihoods identified. This could become a tool and be included in a newsletter or as an article. / SL has drafted and included this in the Roadmap document. This is to be discussed at the next learning event.

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