Why Patient Portals Are Not Patient Empowerment

In a previous professional incarnation I worked in health care and I remain fluent in the language of Health Promotion, a philosophy and approach to health that is more valid than ever.

The central tenets of Health Promotion are the Social Determinants of Health and the need for the empowerment of individuals.  So, patient portals, web 2.0, etc – are these tools of patient empowerment?  That’s the question I’m going to be addressing and in case the suspense is killing you, I’ll give a preview of my conclusion: “No.”

Which will undoubtedly strike many of you as counter-intuitive, so here is my reasoning.

We start with the first question needed for all social analysis:  Whose empowerment?  Which patients?

Very frequently we hear the term “revolution” used to describe the phenomenon of people who are increasingly accessing medical information on the Internet.  It is their demand that is being cited as the driver of the movement towards ever-intensifying forms of health information interaction on the net.

And who are these people?  Well, we actually know.  The digital divide is pretty well documented and gives us a very clear demographic.  They are the most affluent, educated and already healthiest members of our society.  We might (and fairly) describe them as the segment of the population most apt to do yoga and eat organics.  In other words, those already well empowered by their social determinants to maintain their health.

From a population health perspective – it is those with the most dire health prognosis and the worst health outcomes (including the rapidly growing demographics of the poor and elderly) who are essentially left out of this “revolution”.

These social realities need to be at the forefront of our analysis.  Afterall, we are here in British Columbia, the province with the highest child poverty rate in Canada, where over 20% of our children live below the poverty line.

So, from a health outcomes perspective, if there is any demonstrable health benefit to be derived from interactive Internet health information (and I will be returning to this question), the very mechanism for its delivery will distribute this benefit primarily to those whose health is already the best and deprive the sickest among us.

I suggest this is obviously not an empowering strategy.

It is particularly not an empowering strategy when the infrastructure for patient portals – that is, the vast expense of the e-health system – necessarily draws critical and scarce resources away from proven health care interventions that could go to those most in need.

Where are the patients who have voted to spend scarce healthcare resources to build a vast, longitudinal database of citizen health information, with its unprecedented risk to patient privacy, rather than investing in more hospital beds and equipment; more health care providers, the reinstatement of needed “delisted” medications and diagnostic tests, more addiction and mental health services, etc.?

In order to say that patient demand is really driving this ‘revolution’, it would have to be shown that the push came from a truly ethical and meaningful question.  Which in this case is not:  Would it be handy to have your medical information at your fingertips on the Internet?  The ethical and empowering question would include the matter of cost and trade-off.  A question like:  Would you be prepared to sleep on a gurney in the hospital hallway or be denied currently available medical services in order to pay for such a convenience?

Because, in essence, “convenience” is the only genuine item really on offer.  Afterall, it’s well-settled that patients’ medical information belongs to them.  No revolution there.  Patient portals are a way to “sell me” what is already mine, ostensibly in a format that will be more convenient because I won’t have to wrestle my supposedly reluctant healthcare provider for access to copies.  But even supposing that my healthcare providers is as notoriously controlling as she is invariably painted by the patient portal boosters, what you need to solve that problem is a clarifying statute.

Codify the existing state of law.  Something that is done all the time.  And is simple, readily available, patient empowering and… cheap like borscht.

But nobody’s interested in any such obvious solution.

And I don’t purport to know why that is. But I have a pretty good guess.  And that has to do with the goals and ideology that are likely informing the push for this ‘revolution’. Goals and ideologies that are far from empowering patients.

The first is patient “responsibilizing”.  Responsibilizing quite often co-ops the language of empowerment, but is a different thing altogether. It is the movement to place responsibility and blame on the individual for their state of health, particularly as that relates to so-called “lifestyle choices”.  This is arguably the opposite of health promotion.

Health promotion, for example, says that you address poor nutrition by providing a way for people who have poor nutrition (highly correlated with low income) to get better nutrition: community kitchens, hot lunch programs, income supplements, etc.

Responsibilization says – you tell them about better nutrition and that it is their job to get themselves better nutrition.

Which brings me back to an earlier question.  Is it really a lack of information that is the critical feature of poor health outcomes in Canada today?  Responsibilization operates as if this were so.  But health research up to the moon proves otherwise.

Not that there is anything wrong with information.  Indeed, there is everything right.  But it is effectively no “empowerment” at all, if you don’t have the means to act on the information.  It is dubious to say the least that the central goal of the ever- increasing focus on individual responsibility is to “empower” The obvious aim is attempting to whittle-down costs by creating the category of the “undeserving patient” and disallowing them from access to certain services.

Secondly, the ‘revolution’ in interactive computer health information is clearly about transforming the relationship between the patient and the healthcare provider.  Some sources are quite explicit about this.  It doesn’t appear to be any great secret.

We are told that the benefit of the e-health system is greater efficiencies, which are to translate into cost savings down the road.  E-health is not supposed to be taking money out of the system – except up front.  Long-term it’s supposed to pay for itself and then some.

However, the last time I checked I could find no actual evidence to support this theory. And when I have asked representatives of the BC government for this evidence I’ve come away empty-handed.

But for the purposes of this discussion, let’s suppose that it’s at least theoretically possible for patient portals to contribute to cost savings by putting some significant portion of healthcare interactions into the virtual realm.

The business model for this idea is an old, old story.  It is also the business model that informs the massive institutional push for on-line education, which, incidentally, is marketed identically to interactive Internet health sites – claiming to be: “enhanced”, “convenient”, “personalized”.

So, what does the research in this online education field tell us about these claims?  I am no expert, but I did call up some research.  Looks like its pretty darned clear that in-person education has far superior education outcomes to distance/online education.  Despite aggressive marketing claims, I found no evidence that the real push for on-line education could legitimately be about student empowerment or enhanced education outcomes.  It is about trying to effect cost-savings by commodification and transforming the role of the teacher.

The model for this involves disassembling and deskilling professional work and substituting work in discrete components, assigned to different piecemeal, detail workers.  I know of no reason to believe that the proposed web-based health services are likely to operate on a different model.

And it is hard to understand how the “enhancement” for the patient is to be achieved by further eroding continuity of care and a personal relationship with health care providers and substituting an inventory of assorted, fragmented bits of “health information”.

Which will, of course, be a colossal magnet for would-be commercial advertisers.

But more fundamentally, begs the question:  Is this primarily a story of patient empowerment, or primarily institutional restructuring for managerial/corporate advantage?

Let’s keep in mind what should be obvious — that e-health in general, including patient portals, presents astronomical privacy and security risks and massive financial investment.  And let’s take a sober and scholarly look at what we are being offered in exchange for imposing this risk on patients, who have essentially been no part of the process that is ushering in the “revolution”, but are being assured that they’ll be empowered, somehow, once all the really crucial decisions have been made on their behalf, without them so much as knowing about it.