Digitally Enabled Chronic Care Community Networks: beyond '1hr Fortnightly zoom Cafés'

A vision and call 2 action to improve chronic care provision.

The ability to develop digitally enabled communities is well established.

The fact that chronic care digital communities are not YET prevalent is because the vision needs to be developed, spread and realised. It is happening piece-meal (for example on facebook) and mainly by the user base. SO MUCH more is already possible but not embraced by, in-fact even resisted by the agencies that should be in the vanguard.

[[ After I wrote this piece I had conversation that showed that while the need was blindly obvious to me it was unimaginable and totally hidden to others - so i added a few thoughts in a two comments below. The 1st linked here and the 2nd has the real core reason why the opportunity must be progressed ]]

Advantages to be gained

Digitally enabled communities diverge from the physical world in ways both limiting and enabling. Some positive ways that they are of benefit comes from the potential to give broader, deeper, swifter, cheaper, more accessible support of all stakeholder needs, wants and desires themed around members who actively self-selected their group membership.

There is wide spread appetite amongst consumers, especially in sparely populate or otherwise challenged regions of the world like Canada or even Scottish highlands & islands.

My direct experience of the heath service (in the UK & allied orgs) is its mindset regarding its customers (eg illustrated by consumer communications) is rooted in the 19th century (physically posted snail-mail letters!), it has no concept of Service Management or Capability Maturity Models supporting service improvement. The advent of GDPR and th rise of litigation has understandably cowed many into timidity.

At the same time the sector operates in ways that cannot hope to provide the support frequency that the research repeatedly shows generate the best outcomes for their clients. Further; it omits awareness of the emotional, motivational 2ndary and tertiary aspects of adapting to the life changing consequences of events that result in the need for their services for the whole affected family and social circle.

Motivational support through digitally enabled peer networks IS the biggest lift to realising improved outcomes for a wholly family in the last 100 years

Digitally enabled platforms don't replace they do extend/augment the means by which stakeholders can connect to offer & draw support and community/social belonging. In turn they are rewarding for career professionals & their clients. [Note 'Patient' conveys unhealthy connotations that are part of the mindset problems of adequate care provision]

An example model is the facilitation of digital communities through hubs that are tailored to support anyone with ABI (Acquired Brain Injury) related needs such as stroke survivors and carers (indeed any chronic care). These communities can foster improvements in physical & mental capabilities, wellbeing, and provide for more general social interaction from peers who have shared lived experience - peers who 'just get it' and wide (very wide & deep) knowledge of the interventions possible.

Time and again the stories of ex-professionals who have had strokes show they just didn't understand till they shared the experience - read Lucinda's comment below or Bolte-Taylor's or neurologist Prof. Udo Kischka. As #StrokeWarriors we know professionals are knowledgeable and are wholly inexperienced, while we have the ability to interpret but not the knowledge; a fusion is in everyone's interests.

Existing enablers

Through the use of programmes such Sococco or Remo or Welo or Gather.Town even Virbella and many others, that offer a 'destination' the facilities already exist to set up shared spaces that are synchronously interactive and permanently available to all - 'Drop-In' Centers. These tools now have well established/ known operating paradigms & capabilities. Similarly purposed tool that are asynchronous (therefore support persistent messaging) include Facebook, LinkedIn, Twitter, TikTok and the network construction toolkit MightyNetworks or Circle, or Haaartland and many others

Likewise conversation platforms such as Discord, Discourse, even slack, pumple (and a LOT more) that offer themed text and repository have dissimilar useful capabilities. General tools such as wiki builders and domain specific apps also exist. Domain tools such as Alfred, LookToSpeak, Rehabit, RehabPlus, PhysiTrack, PhysiApp, and tools that combine digital and physical rehab aids: Gripable, NeuroBall, Flint FitMi etc x 1,000 are springing up all over the place! Platforms like PatientsLikeMe and the plethora of related sites have potential to make great advances quickly by aggregating large data lakes for machine learning & isolation of parallel effective (& ineffective) pathways that integrate many factors.

All these digitally enabled platforms vary in their features so provide different functions and all would usefully support the ABI/ stroke community at all stages of their journey in complementary ways as well as competing ways and in part overlapping and in part unique ways and mostly in ways as yet unintegrated either technically or in purpose-related ways (and indeed in ways as yet unimagined). Being digital they are capable of integration.

Being extant they are the beginnings for the evolution of the purpose built tools that will be the futures incarnations.

Imagine...

As example imagine a virtual drop in centre based on any one of the 'destination tools' combined with the medical orientated tools above. They enable 24x7 presence. Maybe 'rooms' are dedicated to interests -for example - One room maybe a Common Room for social video based chat, other 'rooms' set up for exercise classes and online games, health tips, nutritional themes like cooking one handed or childcare from a wheelchair etc.

Maybe a 'floor' for ABI and another of cancers & another for anyother community of peers'.

Maybe a 'notice board' on the upper-limb area would plot reps of exercises and achievements by members of a class using neuroball exercises as a peer accountability/encouragement mechanism in upper limb rehab. Maybe neurofenix (and the others) have a ' therapist in residence' and or a customer services desk (and or sales?) in the centre with bot/ staffed text/video enquiry capacity. The nueuroball (or gripable etal) device could be building that data lake that AGI then processes to recommend exercise regimes based on an individual's moving target of motivation & capability. Something no physio i've yet met understands viscerally :(.

Compared to the physical world people can access a far wider community (unrestricted by geography, travel, cost, mobility etc) and interact virtually in richer ways than through a 'once a fortnight online Zoom (Teams-ugh!)' meeting but, OF COURSE still support zoom cafes, discourse forums etc (& without compromising in person activities) etc.

Change IS already here

It is already sprouting up like weeds, and I for one get tremendous sense of support and guidance/ confirmation/ etc from the communities on Instagram and Facebook (and - big surprise - we are mature enough to distinguish medically sound advice from folks opinions. Both have value). In fact folks EXPERIENCE often shows the medical advice to be one option amongst many unvoiced options we weren't made aware of or didn't think to ask about as it becomes relevant as recovery evolves along its twisting pathway. It is also empathetic and available in real-time rather than days/ weeks away.

 The community curated digital access enabled paths with a combination of ephemeral social and persistent searchable modes have the means to place the service users 'in the middle', in contact and sharing successes/ worries/ etc rather than the currently predominant health service model of service users being deliberately & intentionally isolated by infrequent one-to-one contact with (over worked) specialist providers who must constantly repeat activity with different clients that doesn’t warrant or reward their expertise while consuming their time and so prevents greater service access and so reduces outcomes for users and reduces value for money and reduces job satisfaction.

Complementary capabilities to meet a spectrum of needs

Integration of a synchronous (ephemeral) comms platforms based on video and audio (& and text chat) like sococo (remo or gather.town, virbella etc) with a tool such as a discourse and slack equivalents which supports asynchronous, sequenced, persistent, themed/ topic, searchable message based Comms with library functions (eg physician supported discussion and building of assets based on community 'wisdom of crowds' such as experience with different aspects of ABI life (eg community experience with med's side effects & the alternatives to ask next time we engage with professional, details of benefits, DVLA and other agency 'ins & outs', etc). It happens in facebook but the algorithms for post selection and display is tuned to 'fresh' materials encouraging shallow conversation. It happens on PatientsLikeMe but driven by saleable data creation. Facebook promotes community but doesn't help to build a useful reference source from the 'noise' that is the entirety of the internet. PLM collects data but not community and isn't a community enabler.

From vision to developing reality

While the technology is here, the vision to propose, design build and run, and wide acceptance of a mindset that understands, accepts and 'inhabits' such a world has yet to be widely propagated. The virtual conference run by Leanna Luxton's therapist community RemoteRehab (RRC) [Now renamed BodyActivation] provides countless examples of what many motivated but unprepared, untrained, 'initially ignorant but willing and able to learn as they go' therapists in allied health professions and their clients could achieve during the onset of Covid.

In the Virtual Conference RRC ran this year all say they would not go back to a non-digitally enabled service now Covid restrictions are easing/ disappearing. The quote of the event was "the MDT now needs to include a digital comms person"

Required questions, debate and answers

Creating communities has fundamental questions to answer: a cohesive group gains power in society so that influence needs to be understood and anticipated for how it is used and or regulated. Equally, is membership free to use in which case the members become the commodity (like PatientsLikeMe) or is membership charged to fund the environment and protect from interests such as vendors of relevance?

Test for achievement

Success would (perhaps?) Look like an active membership that is interacting as each member wants to so as to share and meet their needs. To realise the vision above we need:....

Significant inchpeebles & milestones

•   = a "we"; the guiding community with diversity of opinion and interests and the motivation to invest thought, time effort to the envisioning, framing and road mapping of any initiatives. A group will be required initially who recognise they actually have to commit effort before the benefits flow - probably for a year or two to reach a self-sustaining 'critical mass'
•   = An architecture/design that is for as long as possible still fluid (1st conceptualize, 2nd build & use, 3rd design). Maybe it's a series of interchange markups that allow 'gluing the bits together'. This will constituent IP (Intellectual Property) and ownership and governance will need to be considered to ensure it evolves and isnt abused.
•   = technical platforms need to be chosen and licenses acquired (donated?) and services configured - a group of volunteers would be helpful to short list and select, configure etc. An open non exclusive architecture?
•   = a membership acquisition & retention (& exit) service needs to be set up and operated. Membership and identity bring challenges not the least from the tendancy of many organisations to 'weaponize' GDPR etc instead of honouring the intent to protect the people
•   = an information architecture to answer "what goes where/ how do I find topics and people/ groups of interest?". How do we roll the best of facebook type apps to wikipedia/ physo-pedia / medicines wkik like those offered by the nhs and elsewhere
•   = Interested third parties need to be approached & attracted to participate as providers such as nhs chronic care providers in Allied Health Professions (AHP), private sector ahp, 3rd sector orgs, relevant vendors etc and of course the bulk of the membership as consumers and contributors on a engage if you want to now or later but we are not waiting
•   = a LIGHT WEIGHT code of conduct (CofC) and strategy and operational procedures needs to be thought through, described and trialled as charter or initial policy until what they regulate has been stabilised and challenges understood
•   = onboarding materials such as how-to, C-of-C etc need to be drafted and trialled with an initial band of community participants (perhaps divided by interest group and or role holders such as consumers, contributor, expert therapists etc
•   = structure needs to be decided eg owned, copy left - creative commons, franchise, affiliate, community of interest, etc

All the above can light a fire. Each windblown spark can kindle another. Success will be when many networks exist all with their own possibly overlapping personality/ culture and nuances and memberships

Simon Harris

twitter:@51monHarr15

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https://www.linkedin.com/in/simonharrispmp/