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john dodds

This is why NHS software contract is running towards eight figures sterling.


I guess if you work for the insurers you would naturally see them as the primary stakeholders in these scenarios.

Personally, I think I have the most to lose when it comes to managing or mismanaging my own medical records, thank you very much.

So i would 'flip it' again and see what you come up with when the PERSON with the BODY being treated, who is PAYING THE INSURER, (and often as a captive, and not as an intelligent agent making the best choice available).

Anyway, aligned with your point about marketers on the last post, what evidence do you have that insurers values and their value systems are aligned with the people they purport to serve?

Aren't the objects flowing through the insurer's system people first, and shouldn't there be some sort of first principle constraint in place, like a general function optimizing first for the well-being of the patient?

Just wondering.

Value systems and construction of value-supporting contexts in a human frame of reference seem to me, after all, the most critical design problem, once the mechanics of the technology used to build the thingamy is handled, right?

As a designer of reality, one's point of view as to which things are important and how they are represented are quite critical.

It does seem that the health of the messy object, who, in the end, is actually paying for it all, is the whole point.



of course you are the primary stakeholder - the idea is for you to use the "powers of economy" for your own purpose. Thus you have to find the intermediary that actually have a direct and easily measured pecuniary interest in your wellbeing - the insurer falls nicely into this slot.

Add some new business opportunities for the insurer and you have even more clout: With the suggested model they can run some of the IT backbone as a service for health care providers, pharmacies and labs and offer you useful services to boot.

This particular intermediary is also the (only?) connection point for the indirect transactions and records that is and intricate a part of your health records: Pharmacies, laboratories, different kind of health care.

And why stop there? Should you (and your doctor) not be interested in keeping track of any other issue that influences your health? Training, food, whatever... with the suggested model these could be incorporated as well if need be. Your need or wishes that is. Let the gym upload your records, keep your own diet plan online in the same system.. no end. Useful for you, useful for for your family doctor, useful for the MD at a hospital if you were so unlucky to be hit by a car without a stack of patient records under your arm.

With the flip suggested the supplier of this particular service would be of your choice, not as today, something overly regulated or even worse, an ad-hoc record keeper as you use different health services.

You choose what insurer to go to in an open economy, or where the government is the insurer, you use your vote.

Thus the market (you) should ensure that the supplier is aligned with your values and in practice, allows you insight and end-control of your records. If not, take your business elsewhere!



Government being the insurer here in Finland (as you said), the issue of sharing medical records has been under discussion during the last years. Whether the records are shared by moving the data (as is the current model) or storing the data centrally and sharing in real-time (as in your vision), the discussion always returns to privacy. At the moment, privacy issues are handled by having the patient sign a paper that allows the treating hospital to share data if requested by another hospital (or an insurance company? I don't know...).

And without really knowing anything about insurance business, I wouldn't be too confident the customer's well-being is always at the heart of their interest. I could imagine a situation where a dead customer could be better than one alive (but suffering).

Anyway, I understand your point was probably more illustrative than specific, but somehow I believe this nut might be harder to crack than what you've accomplished. Still, I have no doubt you'll crack it one day. ;)


Niko, hehe, appreciate your belief in me :D

Well, it certainly is a hard nut to crack, definitely beyond me... but perhaps that's where the clue lies, that the only hope I have to crack the nut is not to crack it ;)

Freely after Buckminster Fuller: Best way to change things is not to fight the existing ways but to make them redundant!

(Could easily be the thingamy slogan that :D)


...the personal data is owned by the individual it refers to.

If they own and make the call about who it is distributed to....

Give the patient/receiver of health care their own file. It stays with them and is accessed in the immediate context of their receiving an intervention etc.

Much prefer the co-creation/communities of care model. Removes control from the professionals - let's communities develop context specific solutions to their health problems.





I guess the reason for not having the data owners (patients) hold their own file is the same as why people use banks: You trust the bank to keep your money safer than yourself. The difference between the government (or whoever it is) holding my medical records and a bank holding my money is that I have free access to and can do whatever I like with the money...


... and I trust the MD to heal me more than myself ;)

That said, I'd rather have my records as transparent as possible - if a MD fills in my records with observations, diagnosis, plans etc I would feel more at ease if I know that he knows that his peers can see what he did too... nothing equals peer pressure!

And the bank example is a good one:

Ownership and record-keeper does not have to be the same - I can own the records (as in the US) or the government can own the records (as in the UK).
With no real bearing on where they are kept - like I own "my words" even if they're kept on a server somewhere!

I only want to assure best possible "keeping and updating" - and that certainly is not the case today as my records are kept ad hoc in paper and separate applications in multiple places including my own training log and Polar pulse watch :D

(Obviously my pulse diagrams could come in handy for a MD if I'm ever carried into a hospital with a flimsy heartbeat!)

Joshua Rosenthal, Ph.D.

Without a doubt, patients are the primary stakeholders and in order to make informed decisions, stakeholders need data. It is the insurance companies who have the most comprehensive capture of individual patient data. But that data and an environment of trust in which to use that data, are non-existent to patients.

We want to create an "architecture of participation" in health care based on two fundamentals: patient trust and patient ownership of portable data

1. We are going to create a third party company (not a plan, not a provider, not the government) that serves as advocate and aggregator for patients.

2. Health plans will send data to this third party and will pay the third party a per/member/per/month fee to provide a personal health record for each patient.

3. That personal health record will be portable. I, the patient, can take the record with me wherever I go.

4. As data owner, I the patient will grant and revoke access to it. (Somewhat similar model to consumer credit records – person walks into a mortgage broker's office and grants access to pull the file.)

5. Said third party company will provide a platform where patients can act—share ideas and experiences, voice creative solutions and pressing needs as users of the health care system, form local groups to tackle health issues, mobilize into action against those who would choose to adversely impact our health, etc.

6. Said company will also use our collective data to further research and development—a set of de-identified data will be made available for free to researchers and health care providers.

7. Said company will aggregate health information from all corners of the globe making the content more accessible and our health care system more transparent.

8. Said company will create a non-profit arm that receives x% of profits and uses those profits to provide insurance to the uninsured among us.

An unrelenting focus on value and a flexible data architecture are prerequisites. Maybe there's an important role for Thingamy in this health care architecture of participation...

Sig, enjoyed the discussion the other day and look forward to continuing the conversation. Also, lots of interesting nuggets by commenters.

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