apractis.com Blog

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How about we coin a new term called Personal Information Accountability? (PIA)

As more of all generations move away from sequestered and constrained information definitions, tools, containers and “others’” rules, and into more open modalities of posting, sharing, sending and even modifying….the individual now has an expansive relationship to information. When we create content with a certain meaning (as of this moment in time) and direction (ie it is for me, or for you, or for a group) we now have to be cognizant of how that same information can be read off line, or real time, synthesized, copied in snippets, become part of some other totally different media, and ultimately traced back partly to us, partly to others, and transformed beyond recognition as of source. It is as though by talking in the phone parts of our “vocal dna” can be mixed with other signals and create a new voice.

Privacy now becomes something that the individual must take a huge responsibility over, not “outsource” to a government or other protective agency, because what is private at one time needs to be more public at another. And humans will need to understand how to manage information just as they do when they are talking face to face real time and interacting with selective words, body language, etc

And along with this will come new accountabilities for the ramifications of our person-generated information being leveraged by others distant in time and place for other purposes. Doctors resist the idea that consumers will put credible information into a personal health record, But if the person entering it actually bears some accountability for the results of how it is used, then he/she will become a much more active participant in its creation, transmission, and maintenance. Just as we should have far more people insisting that they get a text message to their mobile phone to confirm ANY time their credit card is being used and money is leaving their account. The banks might not like the inconvenience of having to “hold money” and lose the float, but they are not the ones who pay the price for our credit card being used inappropriately.

More on this really interesting area later.

AJB

The healthcare industry keeps talking as though the average consumer even views their own information in a manner that results in a thing called a Personal Health Record. That is an artifice of an industry that also thinks that the doctors want an electronic medical record-as opposed to having more digitized information how/when/where it is most useful. If we ask people what they want they will likely focus more on the result and the workflow efficiency. I would submit that people are already doing some of and will do more of what they “want and perceive they need to do” than what some depersonalized process tells them they “ought to do” And the confusion about what a EMR, EHR, PHR even are–since it really depends on the context–makes this even harder.

What people want is something like this

Not have a big chance of getting a medication that wont help or will give them inconvenient side effects

Not have to worry that someone will advise them and neither will have time to figure out that they are likely to have an allergic reaction to something

Not have to repeat tests that have risks

Not have to waste time filling out the same information every time they do something different in healthcare

Be able to get an answer to a personal question from someone that they trust, know, or can rely on

Not waste time getting to an answer

Have doctors and nurses spend the right amount of time with them when needed

Communicate with the healthcare industry in a way that they want, when and how they want. just like other industries

Whether keeping a personal health record is a primary goal or a “default” objective because there is no more realistic way to achieve all this, and whether their keeping personal records in the absence of the industry believing that a PHR is the PRIMARY source of core information, not an offshoot, is a serious question to ask if we are to understand why this “no brainer” is not a more ubiquitous reality. But there is not much question that figuring out how to achieve this in a pragmatic, non intrusive, non-technology centric model is a laudable objective. I have always believed that we should be thinking of this as a technology facilitated “service”, not a thing in itself. And if we dont start getting the message across that this is something an individual can expect to “Do work on” and “Pay for the sanity of having” we wont get there

I have met the people from VitalKey, for example, and that is a centralized supported workflow process that acknowledges the idea of a PHR is a dynamic ongoing process rather than a “thing” There are other models, and technologies. Alot of the industry, as with the EMR industry is still a population based research project in my view!

More later, just some thoughts

I think one of the most important things for physicians to realize is that they can take total control over how they manage their own communications and information. This is a our mission at UpDox, which I have co-founded. We also have a relative shortage of physicians and other healthcare providers upcoming. This means it is time to stop reacting to what we think others are telling us we have to do, and stand up for what believe is the right way to do things. We dont want to rush and our patients dont want to be rushed. We want to be paid for our time and patients are used to paying professionals of all other sorts for their time already. And we want to determine what aspects of what types of technologies best serve our own needs, not “accept” among a limited list of what other organizations decide are our options. More on this later

I was asked to present on electronic health records, registries, and information technology at a national conference on Birth Defects Prevention Network. I thought of this while at the meeting:

Some have too many, and some have too few
Some have three when they only need two
Many are green when they want to be red
And some just feel funny, but its all in the head

But no one can know what is true in advance
So it’s better to not leave surveillance to chance
It is data, my dear that we must get together
It has to be better than a bet on the weather

Along come the digital fairies to show
It is not just our labs that create things we know
Our fingers send data to systems that thrive
But we’ve clicked till our mice are now barely alive

I am convinced that the application of the concept of litigation into an industry where the primary decision makers are by definition trained and forced to make decisions in the presence of incomplete knowledge that is of uncertain validity (a core competency of clinicians)–makes no sense at all. Forget whether it is outrageously expensive, increases costs with no level of predictability and seems to have no one accountable for the ramifications of its existence. It just should not exist in concept. It is the systems of care that are essential to peoples’ safety, and all emphasis of liability should be on those systems.