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.
Context
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,…
Functions
- 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
Considerations
- 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
Initial setup
- To be discussed with possible platform partners
Possible evolutions and extensions
- All conditions with non-trivial pathways