ADVISORY & DISSEMINATION BOARD

MINUTES

SCALING UP SHARED Haemodialysis CARE

Date: Monday 27th March 2017

Location: ZOOM video conference and Voice Teleconference

Time: 09:30 AM – 11:30AM

Attendees :
(via telephone)
Donal O’Donoghue CHAIR
Berni Stribling
Paul Bristow
(via Zoom)
Tess Harris
Martin Wilkie
Mike Nation
Sonia Lee
Wendy Tindale / Apologies:
Hilary Chapman
Valantina Karas
Eileen Hall
Becky Malby
Jon Gulliver
Liz Hill Smith
Paula Ormandy
Item / Comment / Action
1 / Welcome and Apologies:
All the forum introduced themselves and confirmed where they were from and what technology they were using (teleconference of ZooM).
2 / Minutes of Previous Meetings
The following corrections were requested to the previous minutes :
Page 1 – changed developed to devolved
Page 3 - Correction of spelling error
Page 4 – Bullet 10 changed ‘no’ to ‘now’ to correct sense of sentance
Updated minutes will be circulated with these minutes
The ‘previous actions’ table at the end of these minutes show the status of actions from the previous minutes.
3 / Programme Update
3.1 Health Foundation Status report
3.2 High level Plans and milestones in next 6 months
Key points were presented by SL as follows :
Breakthrough Series Collaborative
  • Step 1 (first 6 teams) completed 4 learning events & 4 Action period Calls
  • All events documented for evaluation and feedback purposes
  • All teams attended all learning events – intermittent attendance at APCs
  • Step 2 (second 6 teams) first (QI ramp up) learning event 12th July
  • First Joint event with all 12 teams September 19th
Lessons / Challenges
  • Time away from unit for professionals at learning events must be used wisely :
  • Recognition of ebb and flow - maintain enthusiasm and support crucial
  • Had to think very carefully about content and ensure they were FUN
  • Have to make it easy to get there – CARs / pre-booked train tickets
  • Technology and working practice limit the benefits of conference calls Trying new techniques (Zoom) but still working on it
Research – High level
  • 3 Data collection points, Baseline (Dec), Jan and April. Next point due in July - All data returned to Sheffield and entered into database (Feb/March and May)
  • Data passed to renal registry /Patient View – Activation levels returned
  • Second Data collection point shows a 20% data drop off - status change / non returns
  • Health economic methods determined which required an ethics amendment.
Lessons / Challenges
  • Designed to be simple but still had issued with data completeness and quality :have advised of ‘best practices’ but some sites did not follow suggestions
  • Will continue to advise and play back numbers so feedback is provided
  • Provide feedback to patients via newsletter of what the research is giving us.
  • More patients than expected did not want to participate in research (or any research)
  • Research teams vary in style and results
Communication & Governance
  • ‘What I tell my Patients’ (BJRM) Published June 2017, Protocol submitted for publication (BMC nephrology)
  • Useful branded goods including lanyards, pens, pencils, labels
  • Programme invited to speak at a number of conferences
  • June Newsletter published
  • Status Update letter sent to all EXECs who supported the programme
  • Well established twitter feed @sharemydialysis with 215 followers
  • Nurses closed facebook page, patient facebook and whatsapp, core team whatsapp group.
  • Website updated with articles including Patient stories, governance papers, learning event reports and marketplace of information & tools
Lessons / Challenges
  • Can get very overwhelming to have so many strands of activity – need to ensure each activity has a clear reason and benefit that contributes to the programme as a whole
Patient Engagement
  • All teams have patient partners involved in their teams some attend learning events and others are supportive within local units
  • Patient storeys are the most powerful explanation of ‘why’ we are doing SHAREHD
Lessons / Challenges
  • Patient involvement in co-production is not straight forward - there is no magic method as circumstances (patient and health professionals) vary.
  • Working together and listening to the patient voice is critical.
  • Patients need to be supported to help the co-production, it is not always obvious what or how to be an effective patient partner.
  • Recognition that different levels are OK.
  • Coffee Mornings are a great mechanism to engage Patients both in Sharing their care and being involved in the intervention.
Next 6 month Milestones
  • Continue learning events - Wave B *1 and Joint *2
  • Presenting at NKF, EDTNA @ Krakow and Derby
  • Publish Protocol (BMC nephrology)
  • Next ‘Full’ data collection to see if any trends emerging
  • Complete all patient and Staff interviews
  • Commence Economic Data collection
  • October - Interim Evaluation Report & Next Progress Report for Health Foundation
Discussion points raised were as follows :
  • TBC
/ SL
4 / Key Questions 1
“What message best encapsulates Shared HD Care for you ?”
5 / Key Question 2 –
“Patient participation is essential for Co-Production – what are the challenges and how to facilitate them” / SL
SL
SL
6 / AOB
  • No additional points raised

7 / Summary & Date of next meeting
Agreed to hold next meeting in July but over social media teleconference facilities - perhaps Zoom
Next face to face meeting to be held at end September after the first joint learning event. It was suggested to hold it off site to improve parking issues. Areas to cover at next meeting can be
a)Patient inclusion and how to build a patient groundswell to want SHAREHD
b)Evaluation findings to date

PREVIOUS ACTIONS

No previous Action – table included for future reference.

Meeting date/Section / Action / Status
9/12/16 – 3.2 / SL to update slide to state that patients are ‘seen as passive’ rather than are passive - for future audiences / CLOSED
Slide deck updated by SL and distinction noted by whole programme team
9/12/16 – 3.2 / WT advised that the NHS England Test-Bed Programme had synergies with this programme. She agreed to provide details and contacts for the programme. / CLOSED
Details provided by WT and SL has met with the programme lead.
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 (a) MW to request (b) Evaluation team to do this. / ONGOING SL/MW
a)Request made
b)Specifics of when to be agreed.
c)Ethics approval to be confirmed
9/12/16 – 5.3 / Include in letters to Execs the suggestion that ShareHD can be seen as an exemplar of how to progress solution focused self-management / ONGOING (SL/MW)
Letters drafted to each Trust signatory – PIs given option of sending with own cover letter or it being issued from MW.
Update 23/3. All letter sent to PIS – COMPLETE
9/12/16 – 5.7 / A question was raised if there is a resource implication for NOT promoting and progressing SHAREHD and Shared Care i.e. need to be looking for ‘what’s in it for the trust’ and why should there be investment in this programme to maintain and promote spread. This is currently an unanswered question but could be augmented to the evaluation in terms of quality of life. / ONGOING (SL/MW)
Expect to build on the health economic evaluation work which is at very early stages.
9/12/16 – 5.8 / Discussed ideas and questions about Spread to be framed into questions for the next A&DB review. / CLOSED

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