Patient Engagement outside of the hospital walls

Discussions
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One area where IT has potential to have significant benifit is to assist engagment with patients outside of the hospital.

This could include helping patients to:
“Engage, empower and support patients to self manage with your interactive, timelined care plans” - SHI Global http://www.shiglobal.com/home.html

or in the words of another provider of such systems:
“Connect with patients and families at every point along the care continuum” - Getwell:)network https://www.getwellnetwork.com/ (this does inpatient engagement as well as outpatient engagement)

These systems could potentially lead to:

  • Improved patient outcome
    • better informed and more motivated patients recover quicker
  • Reduce cost of the system
    • e.g. reduction in outpatient clinics required, reduced readmission rate
  • Improve patient satisfaction
  • Reduction in readmission rate
  • Earlier detection of complications
    • eg via patient reported outcomes in post-dischargre survey

Can I ask:

  1. Is anyone aware of any similar systems currently in use in NZ?
  2. Is anyone aware of any published evidence (preferably in peer reviewed journals) to support any of the hypothetical claims above?
  3. What would we require of such a system to make it worthwhile to implement?

For number 3 above, I have created a Wiki in green below. You can either add your comments to the Wiki, or just add them as a normal reply below, whichever you prefer.

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Ooh you’ve touched on my favourite topic Damon. There’s plenty we can do in this space. I would like to see more done before the person
becomes a patient and before they go to hospital (even help them avoid going to hospital).

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What could we expect of an Ideal Outpatient Patient Engagement System?

  1. Support the following functions:
    • Provide information specific to the patient and their condition
    • Provide surveys/questionaires that patients can complete to assist with their care.
    • Provide a means of communication from the patient back to the care team to ask questions not covered by survey response, or share photo of wound.
    • Give feedback to the patient as to whether their communication has been read or not.
  2. Be easy for patients to use and engage with
    • user friendly design
    • accessible on patient’s choice of device
    • easy to log in to
    • large enough font for visually impaired
  3. Allow for use of evidence based templates and algorithms
  4. Be easily customised for local care settings
  5. Allow for
    Allow for a system of regular review of the algorithms, with ability to continually re-evaluate the algorithms and continually adjust them on an ongoing basis.
  6. Comply with data and interoperability standards that we would expect of any new clinical IT system
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“Patient Portal” is the commonly used moniker of course - although the more advanced ones in the UK have many “engagement” features or are developing them.

Basically, we are talking about an interface which allows appropriate interaction for patients with their data. Starting with the bare basics and iterating it seems the way forwards - overwhelming as a full system!! Oh for OpenEHR so this could be done nationwide.

Let’s have a go at this!

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Hi Damon,

I am the founder of Wellington-based Noted. It is a SaaS product for health and social care providers. It uses context specific, dynamic structured forms to allow workers to capture comprehensive notes faster, that are suitable for data capture and analysis.

Our ‘client/whānau app’ (as I prefer to call portals) will be released next year. It will enable people to enter data, view their own (curated) records, book, and message workers securely, within the application.

I have heard evidence quoted that demonstrates the ‘hypothetical claims’ you make, though I do not have easy access to them.

Exciting subject!

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For my money’s worth I think primary care is a great place to start this conversation and I would really like to see DHBs support patients to access good quality information in one place… the primary care record/portal.

We have to make sure though that this sort of work is lead (or at least partnered) by the community and not by clinicians. We also need to be mindful of the digital divide and the appealing equity issues we face. If we focused on aiding Tangata Whenua to grow this space I think that would be ideal.

Proceed with caution the worried well may benefit more than the underprivileged in this space.

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Trivial it may be but just wanted to pick your brains on patient portal
I have a problem with this term - portal is so 90s early 2000s terminology and in the era of Apps and cloud is there a better term for an information system designed for patients (and preferably in consultation with consumers!) that has various interfaces, including

  • portal (e.g. using a browser on a larger display area - PC, laptop, tablet
  • Apps (might be multiple)
  • APIs
  • And potentially via personal assistants, AR/VR etc.

Any bets?

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Hi Koray, no, there isn’t in use a universal term for patients’ access to their medical records, other than Personal Health Records
(which is ambiguous as it isn’t clear that patients are accessing their records kept by their clinicians, and can imply that patients are keeping records themselves independently from their clinicians). If you look at Tang et al’s use of Markle’s definition
of ‘personal health records’ you might get a few ideas on how to progress the concept. It’s nice and broad, and I like the diagram they use and the idea of ‘tethered’ PHRs (aka portals).

Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., & Sands, D. Z. (2006). Personal health records:
Definitions, benefits and strategies for overcoming barriers to adoption. Journal of the American Medical Informatics Association, 13(2), 121 - 126.

You could also look at David Bates et al’s work on ‘open notes’ but that’s essentially patients being able to access their clinicians’ notes about them.

I like Swan’s work in which she writes about an ecosystem in which all sources of data via patients and health services and clinicians into the ecosystem of information that
forms the medical record enables us to consider the contributions and uses by patients to their medical record ecosystem. This takes in to consideration the idea of ‘ubiquitous computing’ which sounds like what you’re referring to.

Swan, M. (2012). Health 2050: The realization of personalized medicine through crowdsourcing, the quantified
self, and the participatory biocitizen. Journal of Personalized Medicine, 2(3), 93-118. 10.3390/jpm2030093

When we start thinking of P4 (or 5 or 6 or 7) medicine, the ‘portal’ concept becomes inadequate and we are obliged to think about systems and ecosystems. P4 medicine is based
on ‘systems thinking’.

Flores, M., Glusman, G., Brogaard, K., Price, N. D., & Hood, L. (2013). P4 medicine: how systems medicine
will transform the healthcare sector and society. Personalized medicine, 10(6), 565-576. 10.2217/PME.13.57

I particularly like this article in which Bragazzi takes the concept further and uses ubiquitous computing plus P6 medicine to create new relationships between clinicians and
their patients as well as new players and interactions (and people select their own technology which is not necessarily tethered to an official medical record but can be tethered).

Bragazzi, N. L. (2013). From P0 to P6 medicine, a model of highly participatory, narrative, interactive,
and" augmented" medicine: some considerations on Salvatore Iaconesi’s clinical story.
Patient preference & adherence, 2013(7), 353 - 359.
https://doi.org/10.2147/PPA.S38578

I like the poignancy of the article and would like to do further research on this kind of thing (have been applying for funding to do a project with A/Prof Stephen Buetow on
thriving, but not attractive enough to funders). Perhaps this CILN network can give us some ideas for funding to learn more about the topic and people (aka patients) can thrive in this environment.

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