I’m looking for some guidance as to sources of insight.
I’m having a few discussions with developers in early round venture funding Who are creating medical grade rehabilitation tools. Also some health authorities looking at transition from hospital to long-term at home rehab
One of the great challenges of repetitive exercises in much rehabilitation is motivation. Motivation is posited to be easier in group or community settings contexts. Next generation tools (actually current generation but as yet ‘crude’) are mostly Bluetooth/ Wi-Fi enabled and log performance data)
Where would I look for information or competent folk to join a conversation about the integration of a discourse community & it’s possibility of meeting the requirements of medical grade data handling?. There are obviously regulatory issues such as HIPPA/EU equivalence, also ethical concerns, and there are as yet no standards for data interchange for a aggregation of data pools for research to use as the base for longitudinal studies across different therapeutic interventions
Great topic, discourse and next-gen platforms can be helpful for the medical field.
HIPPA regulations make a lot of things difficult for providers, such as paramedics who want to check in with how a patient is they took to a hospital, the law prohibits a hospital from telling medics anything after patient has been surrendered to hospital care.
For recovery process if a patient wants to work with other patients in group therapy or send a thank you note to a medic that could be great.
UW medicine uses this platform:
That is a solution that is non-discourse isn’t it? I’m wondering if the power of discourse can’t be harnessed otherwise all this capability will be ignored for bespoke solution and then every vendor will create their own and we’ll have fragmentation instead of consolidation
The benefit of fragmentation is diversity generates ideas the benefit of integration is similarity generates synergies and cooperation working and integration
Yeah doesn’t look like discourse, I don’t know if they would want to try discourse or a different communication platform can ask them.
Would be easier for a smaller-scale practice to do a trial to see if this would work for them.
If your focus is on patients in long-term recovery or rehabilitation from a stroke or anything else, that wouldn’t necessarily need to be integrated with a medical practice if patients want to choose to participate with a system outside of that which won’t put everything they say in their permanent medical record (which is the case for the mychart system).
Here is excerpt from their security policy:
TERMS AND CONDITIONS OF USE
UW Medicine and Fred Hutchinson Cancer Center are pleased to offer you information via a web-based version of our computer systems called UW Medicine/Fred Hutchinson Cancer Center MyChart. We think it is important for you to know how we handle information we communicate via the Internet. This Terms & Conditions statement outlines UW Medicine and Fred Hutch practices and our sensitivity to your right to privacy. UW Medicine and Fred Hutch reserve the right to revoke access at any time, for any reason. MyChart messages become a permanent part of your medical record.
Security and Confidentiality - UW Medicine and Fred Hutch afford the same degree of confidentiality to medical information stored on UW Medicine/Fred Hutch MyChart as is given to medical information stored by UW Medicine and Fred Hutch in any other medium. UW Medicine and Fred Hutch are committed to protecting the confidentiality of your medical information. We limit UW Medicine and Fred Hutch employee access and ability to enter or view information based upon their role in your care. Firewalls, passwords, encryption, and audit trails are further used to safeguard your information. UW Medicine and Fred Hutch shall identify the records released and note the time and date of access each time you access UW Medicine/Fred Hutch MyChart. UW Medicine and Fred Hutch have taken steps to make all information received from our online visitors as secure as possible against unauthorized access and use.
For other than general information viewing, UW Medicine/Fred Hutch MyChart must be accessed with a Secure Sockets Layer (SSL) compatible browser or terminal. Our SSL web server uses authentication and offers a high level of encryption technology.
## UW Medicine/Fred Hutchinson Cancer Center MyChart Proxy Access
Proxy access allows access to the medical record of another person, such as a child, through UW Medicine/Fred Hutch MyChart. When someone has proxy access to a patient, they can view the patient’s record by first signing into their own MyChart account, and then selecting the patient’s name from the access menu.
I think this would be more a dev topic rather than a community one if it’s about the technical aspects rather than the ‘people’ element. I’ll slip it across.
If you are looking for a serious commercial engagement of a developer to build well specified things, please feel free to reach out to email@example.com
It would really help if you could be very specific about your needs, perhaps having basic mockups and workflows you have in mind.
Thanks - You have a much better idea than I about how you wish to categorise things and I’m more than happy for you to put it where it is most suited
I do think there are community and ethic questions as well as coding questions but maybe those are things to pick out over time and post again with a more narrow focus
I think there is potential in the future for some serious funded work. At the moment the potential is to be an early influencer in the field, build credential, being a position of being the prime mover - by definition that’s pure risk both upside and downside. It’s not just technical capability that determines success.
For example the health service that I’m loosely and unofficially affiliated with recognise that they are miles away from having an adequate budget to develop something themselves so are looking to understand if a commercial platform could suit their needs for proof of concept. If they are able to demonstrate practicalities to their sceptical and risk and change averse colleagues then they have the potential to be the template that gets adopted more widely maybe even by the whole of the UK health services in time - It’s almost industry defining so it’s long-term - and then exert influence more widely?
Likewise defining interoperability standards follows metcalfe’s law so is worthless before there are adherents but increases rapidly once there are a few early adopters and then becomes the market dynamics of first mover vs second mover etc.
I haven’t but will Google the name You suggested. Why did you put that one forwards?
And I should say by the very definition of where we’re going the idea of a waterfall type well defined specification before we start is unrealistic This is very much more in the quadrant of customer doesn’t know what he wants, developers that think they know how to create it are deluded or constrained by inappropriate thinking (maybe) - it’s in at least three of Eddie obengsmodel - Walking In Fog & Quest & Making A Movie quadrants of his uncertainty model, it’s in Richard Pascale’s Surfing The Edge Of Chaos arena
And PS are pavilion a DAO?
This is the company you reference, you are affiliated with them somehow?
That’s our website!
Yes, I’m a Co-Founder. Have you seen my User Card? You might also get that impression from pavilion
We are a member owned cooperative.
Pavilion are a trusted partner of Discourse, who have a great track record of building third-party customisations, including complex plugins. (though other developers are also available )
Though that may be more a conversation for if this becomes a marketplace topic, or if you have a definitive spec to be able to contract with them off-board.
I think there are existing support forums for various medical or health-related communities that don’t integrate medical data. What would you consider to be the benefits of an integrated approach, and what hurdles are you envisioning if you do?
Every medical portal vendor will create their own. Look at dozens of Learning Management Systems with horrible forum offerings. And they are so bad that most faculty discount online discussion altogether.
If you are involved in health care and want to build a community of people who are doing whatever kind of rehabilitation, then I’d say, go ahead. And you can skirt the HIPPA issues by not using any information that you’ve collected with HIPPA-compliant systems. Just point them there and say “here’s a community of people doing X rehab.” Whatever people reveal in the forum will be information that they chose to disclose, not information that you have to seek permission for. And consider opening it to all comers. The biggest issue with a new community is getting anyone to show up; better to allow “outsiders” that “we’re not paid to support” than to have it not become a community at all.
I haven’t seen too many of those, but I agree many people may give up on or not even try to use an online discussion board system if it seems difficult or annoying to use.
For if there is integration with medical data that could he helpful for people going through rehabilitation, say to set a goal of being able to walk or jog a certain distance after a few weeks.
This could help with motivation for recovery, that can make a big difference for someone to know that if they achieve a goal people will see that and congratulate them, as well as remind them about their goals if they have fallen behind in training.
There are apps like samsung and apple health that can record simple health data with smart watches, I don’t know if there is a way for that to be integrated with Discourse?
Good to know that Pavillion is a trusted partner, would need to be a more sophisticated and secure system if it’s going to be handling HIPPA data. Which might technically include health data from a smart watch, but would be more important with other test data people may want to keep confidential.
I’ve written a theme component for Strava and Garmin Connect: GitHub - literatecomputing/runners-onebox-theme: Custom oneboxes for Garmin and Strava.
It’s possible to see stuff lke heart rate if you click through to the Strava or Garmin sites. IANAL and I mostly know only about FERPA, but these data are not HIPAA data. If I tell you my heart rate, it’s not covered under HIPAA unless you are my doctor. I’m fairly certain that the advantages of sharing information about rehab can all be had without involving offical HIPAA data. In fact, it’s hard to imagine a way that having HIPAA data in a recovery community could possibly be HIPAA compliant.
That makes sense, good to know.
Maybe good way to start would be to have a scoreboard panel with list of fastest joggers for mile distance sort of a deal.