#StrokeImprovementGroup #SIG is advancing the integration of digital community into post-stroke life - A journey not a destination.
We will be ever evolving.
Below is: First context, and Second current hypothesis about the themes to deliver in the immediate future and related to a funding application
Context
TL/DR: we can already do loads more with digital than we do. We don’t because: 1) people struggle to imagine the future 2) traditional interests and institutions have built anchors to the past into our present.
By not exploring we are leaving realisable advantage beyond reach to the detriment of the quality of #LifeAfterStroke
The #StrokeImprovementGroup is a place for many different opinions from different perspectives to be shared and spark imaginations that diverge then combine and emerge - converge as new solutions item 1 above.
The Longer and Richer Description
Funding
Currently SIG is un-funded
The British Heart Foundation offer funding for cardiovascular research
BHF are willing to consider an application for the creation of hybrid hubs on stroke pathways.
Many other initiatives are exploring the use of digital support in therapy delivery and in establishing communities but to the best of our knowledge no other initiative is seeking to place the community in a integrated and central (leading/ ¿controlling) position.
(Why are we progressing with BHF and not Stroke Association instead or as well? Is this a Qn for Charlie & Duncan?)
A BHF funding application deadline date stands before us.
The deadline is at the end of April for the submission to move the Hybrid Hubs concept forwards.
Meeting notes
Last Tues (18th March 25) Charlie (NHS), Fi (UofEd), Duncan (QMU) & I met to discuss the schedule up to the end of April’s submission deadline.
Timings & WHO
2wk chunks
From here 30/4 is about 6 weeks away.
I suggested we divide the time into roughly 2 weeks chunks.
As a straw man:-
- W/c 24th
Assemble what’s been created, The template for application, The missing bits & costs identified & all in a shared place, with responsibilities clearly assigned
(Is this down to you Charlie?/ Duncan?)
Heads up to reviewers? (Who would they be?)
- Monday 31/3 to Fri 11/4 Assigned people work on finishing draft
- M 14/4 to F 25/4 Reviews & rework draft chunks.
Chase missing info
Polish proposal
- M 28/4 Submit
Is there a subsequent invite to explain or defend?
When do we hear?
What do we need to prepare for?
Deliverables
We must agree what we are delivering from the funding applied for (and what we could deliver but won’t - MoSCoW - Must Should Could Won’t
To the best of my recollection the things itemised so far are :
Operational bricks and mortar locations (Not my circus not my monkeys! 🙂 )
I cannot currently (fully confidently) articulate what the vision is here.
I recall discussion (plus imagination) that it is a number of fully equipped and staffed therapy delivery locations where individuals attend scheduled support from healthcare professionals as well as have access on a drop-in basis to equipment for a self-curated adjunct to prescribed therapies
- Can we build into this an aspiration to emulate the Queen’s Square Upper Limb Program run under Nick Ward’s guidance?
A preliminary set of Operating Procedures (A model) for the integration of peer support and digital community into the workings of therapy delivery.
Component parts seem to me to be a paragraph or a whole document on:-
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lists of topics or questions requiring further consideration because they are currently either beyond our capacity or capability
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statements of What’s In It For Me for each stakeholder group so the benefits of the future can be seen as outweighing the familiarity of the past. Item 2 above
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a generic life cycle of a typical individual’s post stroke journey.
The identification of phases with their physical and emotional entry and exit triggers that peer support and therapy interventions can aim for
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a generic life cycle for the evolution of community
The identification of sociological and cultural opportunities and dangers for societies founded on chronic care needs in digital spaces
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a generic life cycle for delivery of a/ each therapeutic intervention with peer support and with or without cohorts
(Existing?) As amended by/ for peer support
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the ethical, moral and governance considerations that together adequately cover safeguarding of all stakeholders as individuals and institutions
We know from experience that moderation of digital spaces operates inappropriately within the organisations encountered so far and that the escalations for governance are not fit for purpose.
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Digital community will generate data that has the potential to be valuable.
Guidelines about the ownership and access control will be necessary.
One specific ownership structure that is desirable is the Distributed Autonomous Organisation (see https://www.investopedia.com/tech/what-dao/ )
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a scheduling capability
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a dashboarding capability for management of an individuals rehab program
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a dashboard in capability for the research into effective exercise regimes
- research data requires aggregation and anonymization
Aggregation requires a data interchange protocol
Guidelines for amendment / extension to undergrad and CPD curriculums to bring digitally enabled community & peer support into the mainstream
Misc Points
- We are currently using a platform that we recognise likes robustness and facilities for many of the functions We will in future want to make you solve such as diary and data acquisition and on-sign up conditions, bookmarking,…
Gathering of a consolidated list of early additional features is a deliverable
- What are the considerations plus and minus of making the community and/or Simon a co-applicant?
What have I missed
What can be added, deleted, restructured,…