Data… What is it good for?

So I am sitting here on another cold snowy day in Southern Ontario, yet I am inspired. This is probably due to the fact that I am looking out over Georgian Bay. You know, some call it the sixth great lake, and I cannot disagree; I cannot even see land on the other side!

Now back to work. Hmm, lakes… My mind goes to data lakes (don’t ask how that happens…). So I start to think about data.

Some say data is the new oil. Respectfully I must disagree. Data is much more valuable in so many ways. Firstly its value increases with use. Secondly no one can argue its use is bad for the environment or health. And finally its value is amplified when combined with other data, both in the clinical point of care setting and for population health management.

Yes I know all the arguments about data privacy, and in this regard I agree. The rights of an individual to control the use of their data must be respected. But this is different than the security argument. I doubt anyone would not want their data to be available to their care providers, as long as they trust that its use would be protected and only used for managing their health. Does anyone really believe that paper records and data transmitted by fax are any more secure?

Free the data, I say!

This may seem like a bold “call to action” and indeed the antithesis of data privacy, but let me explain.

Within a secure, consent-driven framework (perhaps enabled by blockchain, but that’s another subject), let’s ask the question “why should health data not be available to the individual, their care provider team and, at the aggregate level, for population health management?”

I contest that that is a better way at looking at the data argument. Truthfully unless the individual wants to keep some elements of their health data private, then by default the rest should be available for their care and the care of people like them.

After all how can we truly say we are moving to a patient-centred health system unless we look at the whole person and the entirety of health data about them? How can health delivery systems be integrated unless data from across the care continuum is shared among the care team? And how can we be expected to move to the nirvana of managing health at a population level without comparable and anonymized data available to policy makers?

Across this land, and presently no more so than in Ontario, health policy makers are struggling with shifting the silo’ed health delivery system (BTW it’s not really a system when it is so fragmented!) to be more integrated. To providing more care in the lowest cost setting and indeed in the home wherever possible. How can this be reasonably expected to happen without access to a contiguous health record? How can the individual be more cognizant of their healthcare journey and indeed actively participate in it, without access to data about them?

Trusting I have made the argument, let me turn to some key levers we could use to spur this shift.

  1. A charter of health data rights. We have charters everywhere, even on the GO train! Such a health data charter would spell out an individual’s’ control over their data and its use, but also the expectation of its security and availability to the person’s trusted care team.
  2. Public education. Canadians need to know that controlled access to their health data is best for their care and the containment of health system costs. I realise this will unleash a counter argument from the privacy bigots, but seriously when are we going
    to confront the barrier-based approach to privacy legislation and move to enabling legislation?
  3. Patient access to data. Ah, the age-old portal argument – one or many? Honestly while I have an opinion, I really don’t care. I actually trust in the creativity and innovation of healthcare companies to develop apps that will present health data to individuals in the way that is most meaningful for that individual and their health condition.

These and related topics are being discussed at the CHIEF Executive Forum, and specifically the Data Liberation working group; the results of which will be shared at the CHIEF Executive Forum in Toronto on May 24-25, 2019.

A former Chief Statistician of Canada once said to me “everyone is entitled to their own opinion, but not their own facts”.

I suppose what I am advocating for is a common fact base, individually and collectively. This would form a critical part of the health infostructure, to use an “oldie but goodie”. It will make the emerging transaction-based data exchange platform come to life.

Let me stop here. I have no doubt this line of thinking will elicit reaction, and I welcome that. Let’s raise this to the level of a national debate.

And sing along with me (with apologies to Edwin Starr)…

Data….
what is it good for?
Absolutely everything!

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