I’ve been discussing with an allied health professions (AHP) strategic lead an initiative to create Stroke Recovery hubs in our national health service ( NHS) region.
They’ll likely expand to all chronic care physiotherapist / occupational therapist / speech and language therapist (PT/ OT/ SALT) related conditions - EG traumatic brain injury (TBI), Long covid, Neuro…
He has written a Physical Locations description with headings as below like “Purpose: Facilitate self-managed rehabilitation exercises…access to therapists & equipment: …”
He’s asked me to do the same for digital
I have had a stab below.
I’m sure the collective wisdom of the crowd here can improve on my Ione efforts.
I’ve made it a wiki so most users can edit directly & of course any registered user can add posts to the thread.
In most cases Stroke is a life altering event with life long consequences for survivors carers family and friends.
Generally medical support presumes conditions such as a broken arm or cancer that have a finite healing period, are simple or complicated (intricate) & are adequately conducted between a supervising medical professional overseeing physical recovery with a single individual in estimatable timescales.
Acquired brain injuries ( ABI)s have emotional and cognitive needs in addition to physical rehabilitation - needs are dynamic & emergent (complex).
No single medical professional has an integrated view. Medical science is still short of good understanding.
Stroke thrivers lack the knowledge - certainly initially - needed to curate necessary services; Rehabilitation has pathway stages of indeterminate length - EG acute, inpatient rehab, hospital to home…
Professionals lack of visceral understanding of holistic needs leaves a deficit. Stroke thrivers lack of familiarity with the complex interactions from their holistic needs also suffers deficits. Timescales of needs & medical support are mismatched (& worsening?)
A promising hypothesis is that the deficits can be ameliorated by hybrid peer + professional support networks. New service delivery advances will evolve.
Peer support amends & extends to overcome current modus operandi limits from isolated patients interacting just with professionals in one to one settings
Networked communities of peers support each other for the long term while drawing on a surrounding group of experts at times of need for intervention design & adjustment.
The peer community assists in the self-management of integrated post-stroke life.
Digital Hub’s Purpose
Facilitate people’s evolving (emergent) understanding of personal consequences of their life changing event through interaction with communities of peers, professionals, et al
Provide the destination for connection, questioning, supporting, being supported, record keeping,…
Synchronous and asynchronous TCP/IP etc ( transmission control protocol/ internet protocol) (etc) communication links eg threaded text, audio/ video & graphics, library of audio/video assets…
Design, maintenance / adjustment, Scheduling, tracking,… of Individual and group exercise regimes
Capture, storage, monitoring of goals, proposed actions to achieve, actuals, outcomes, goal progression,…
Granular access, sharing, privacy controls to publicise and/or partially share and/or hide personal and group goals regimes achievements etc
Interface and logging etc to digitally enabled therapy aids eg grippable, mindmaze, exoskeletons, et al…
Aggregation and anonymization of intervention designs, adherence and results versus goals for machine learning analysis of efficacy
Filtering, sorting, searching & retrieval
Virtual Venue Requirements
Implied by functions (?) Plus
Low barrier to initial adoption & flexibility/extensibility as familiarisation & demands grow
Some attempts at a subset of the above are operating on platforms such as Facebook, Redit/Discord, Discourse, Mighty Networks,… These might be considered first generation.
A community needs societal infrastructure: behavioural norms & limits - a quasi legal system with oversight at boundaries, representational democracy & gains influence as communal voice for self interested advocacy
2nd generation will need HIPAA/DPA/InterOperabilty (health insurance portability and accountability act, data protection act) etc
TCP/IP does not have a geographic boundaries (and may not have language based boundaries for long)
Culture needs to be curated with a understanding touch and evolves over time - There is a sociology dimension
Birth of community requires requisite variety of a combination of personality types and critical mass
In the stroke recovery hubs being proposed, no chronic pain specialists mentioned ? i know that one is not yours but seems likely pain is not catered for by the functions named.
In terms of digital, how would the involvement of experts work ? Outside the scope of knowledge of the local community and they have an escalation process ?
Could this work a bit like a helpdesk, level 1, level 2, level 3 issues ? Level 3 is NHS specialist?
Would members of the hub pick up “jobs” ie the queries raised and take those to a conclusion where it is within their capabilities or send to a work group/queue within the hub to progress if in the hubs capability ?
Ie a pain work queue, a walking work queue.
Or escalate to the NHS ?
How would this work, an App ? Notifiers of jobs ?
Would hub members have a user profile ? The profile attributes would determine which jobs they could pick up.
Auto escalation of queries if local hub profile doesn’t have a member with relevant skills ?
Admin queries specialist ? Ability to move work from a queue to another.
Visibility of queues ? Oldest date ?
Link to prescribing pharmacist for quick decisions and alterations of prescriptions.
Hub specific and all hub presentations from stroke specialists using digital capability such as zoom ? Maximising the capability of digital, ability to easily reach a wider audience ?
Nominated individual and back up to form user groups to highlight successes and problems that need help. Hub wide zoom calls on regular basis ?
Could individuals request appointments like push doctor but with members of a nhs stroke support team ?
How do you prevent forum members straying beyond stroke warrior help ?
Would it be purely volunteers or would the hubs receive any sort of payment from the NHS ?
Just ideas as not entirely sure what is being proposed.
My own role in call centres covers the concept of queues, attributes, transfers, mi, visibility, service levels etc hence the suggestions
In short: it wasnt explicitly mentioned amongst the disciplines. I will very firmly add it.
At this stage - The divergent before converging on designs- any and all suggestions welcome.
I had in mind…
Hospital / rehab centre therapists and #StrokeThriver work on rehab and record goals and their back cast decomposition to prescribed exercise programs.
The #StrokeThrivers join cohorts initially based on stroke date and rehab needs (subsequently move freely between groups) that share aspects of progress. A therapy team overseas each cohort, discussing maintenance of the regime with individual and/or group according to each #StrokeThrivers comfort. #StrokeThrivers pass into and progress out of groups as their post stroke capabilities progress (or the group moves forwards together; whatever is the preference of the individuals)
Interesting train of thought. I was in the place where the hubs in there physical bricks and mortar sense embrace the current ways of working of the NHS and the digital hub was an addition that stroke thrivers and those involved in their care had profiles on, had access to exchange of communications etc. I read but you may not have written a help desk ticketing type system. That could be an identifiable capability that is part of the model
Definitely but I don’t regard prescription as being just drug it’s any intervention communicated to a recipient so PT exercises are a prescription with a dosage that is taken regularly or not
Oh hence the atlassian type model - Remember Redbox or RoyalBlue?
How’s this as a clarifier: imagine current NHservices for rehab under physical roofs within a locality - physical hubs (many currently exist). Imagine this forum in use between all of the clients and staff of that physical hub and all the others (the trend has started).
Imagine the integration of all of our recovery journeys such that we had therapies where the group definition was physical and digital, one-to-one and group - a largely missing integration between fragments of existing or already possible service delivery…
It’s not like stroke is rare, there must be more than enough work to keep the teams occupied. The pain clinics in the NHS are a general function for all pain and not just stroke pain. Why not have specialists ?
My recent experience was neurology suggested one set of pain medication and did an immediate re referral to the pain clinic. The pain clinic suggested a different set and didn’t like one of the pain medications suggested by neurology.
I haven’t come across royal blue. May be a different field to mine. Workflow in my area was matching attributes of a call, an email a live chat,a piece of post to a handlers skills.
In a digital world, you could obtain attributes by using pre formatted pages with drop downs/selections. Key words would be another way but takes time to build up.
Wow! You two are way over my head now, or getting there. I wish everyone put this much thought into organizing. That is a strength of mine, however, I am not familiar with the software examples you are speaking of as my experience is not up to date, and mostly confined to setting up marketing and sales websites C++ and HTML, some XML, and database management with Excel or Access. Seems like you are both doing more architecture of a network. I have to admit, I am excited! Almost enough to try to update my education.