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Edited a few minutes after the original post.

Over on the Harvard Business Review blog a post yesterday is stirring up discussion. I hope well-informed SPM members can help shed some light in the comments there, citing as many specifics as you can.

(As I compiled the paste-ins for this post, I was struck again by how much I love blogging and social media. Just look at the great thoughts that are being spread, in mere hours!)

The post is The Trouble with Treating Patients As Consumers, by Augusta Meill and Gianna Ericson at Continuum, a design and innovation consultancy. Please read the post carefully yourself – my own first reading late last night was too quick. Here are some excerpts, then some comments already added by SPM members then I gotta run – busy day here, starting with voting in the New Hampshire primary.

The post begins:

To be a patient today is to be treated as a consumer. But treating patients as typical proactive, in control, well-informed consumers can backfire. Asked to take on increasingly complex decisions and digest ever-larger amounts of information, patients find themselves placed — often by design — in the driver’s seat.

Two thoughts:

  • Design – Continuum is a design firm, not healthcare. Design is great (healthcare needs a ton more of it!) but of course design initiatives need to be informed by a deep understanding of the dynamics of the space – especially the user’s space, the patient’s world.
  • “Find themselves in the driver’s seat”: participatory medicine is about moving into the driver’s seat intentionally, not “finding ourselves there” like unwitting victims.

The unintended portrayal of “hapless patient” appears again in the cases cited:

Consider these cases: [a 61 year old woman who can’t deal with moving her data between doctors; a bariatric surgery patient who was inundated with incomprehensible information; New Jersey patients who kept calling 911 for trivial matters.

All are cases of patients who need to be shielded from anything that requires brains. For such patients, paternalism would be the natural answer. That perspective seems reinforced when they then discuss decision aids (for shared decision making, about which we’ve often written). These tools can be quite empowering to the patient, yet the post says “the intent is not to saddle the individual with the burden of the decision.”

In the Society for Participatory Medicine we feel it’s great (not a burden) for a skilled professional to explain our options and their consequences.

To be sure, many patients don’t want to be engaged in decisions, especially before they understand the reality of physicians’ unwarranted variation in practice. Unwarranted variation has been shown in decades of research to cause immense unnecessary surgery, with the resulting costs and inevitable percentage of errors and deaths after surgery that wasn’t necessary in the first place. So much for just doing what the paternal doctor recommends; this is where an informed consumer/patient can make all the difference.

But SPM members are broadening the perspective, in comments. Mine, then Trisha Torrey and another:

… the blog of the Society for Participatory Medicine. We define participatory medicine as “a movement in which networked patients shift from being mere passengers to responsible drivers of their care, and in which their providers welcome and value them as full partners.”

On the blog we have dived several times into the “I’m a consumer!” “Don’t call me a consumer!” (same with “patients”) debate – different people SPEAK those words in different contexts, and others HEAR them in different contexts. I appeal to people to please *specify* their context – which requires first being sensitive to the existence of a context.

Having said that – yes, we have a deeply dysfunctional healthcare system, in which it’s really hard for providers to get satisfaction and often really hard for patients to get what they need – but, if we’re going to wallow in that acrid reality, we might just as well drink hemlock and get it over with. In the e-patient movement we’re starting work at developing the methods of participatory medicine (very early stages) and, more important at first, raising awareness of the issues. Videos of some of my own speeches are

btw, an excellent example of the dysfunction is the 61 year old you cite, whose potential efforts at autonomy and self-reliance are crippled by the archaic state of IT in most of healthcare. In finance her records follow her around whether she likes it or not; in medicine she generally couldn’t make that happen even if her life depended on it. And that’s not hyperbole. (New federal policy is expected to change that, but it will take years – and consider the implications of the fact that healthcare mightily resisted those policies.)

I humbly suggest that this piece – which is thoughtful and well reasoned – would be better titled “The trouble with expecting patients *in today’s system* to act like *fully empowered* consumers.” Too often in the conferences I attend, I see two missing realizations: today’s system is not healthy, and thus it’s not POSSIBLE for patients to be fully empowered. We who strive to be have a big, big uphill climb.  I think your post illustrates that.

And, in response to physician Omar Chugtai –

Hi, Omar – not sure what you mean by “can’t have it both ways” – if you mean “Can’t ask for power without accepting responsibility” (for knowledge and for consequences of their decisions), I couldn’t agree more. If one wants to step out from under paternal care, one has to pick up the shovel, do some work, develop new muscles, and no longer expect to be hand-fed by Mommy & Daddy.

The good news is that the literature in the related field of SDM (Shared Decision Making) shows repeatedly that when patients are fully informed about their treatment options, they tend to not choose *more* expensive treatment, but *less* invasive, less expensive treatment – and to have outcomes that are just as good, or better. Jack Wennberg’s superb book a year ago, Tracking Medicine, documents his 30+ years of work in discovering, researching, and refining unwarranted practice variation in medicine and how SDM (which includes providing decision aids – the Mayo cards are one example) can have this effect.

And yes, Omar, I’d agree the examples cited reduce patients to morons – people with zero competence, whom we must supposedly never overburden with knowledge. Later this week I hope to pull out counter-examples of patients who brilliantly supplement (as partners) the best physicians’ efforts, and in far too many cases (through social networking, online and off) even correct errors and omissions in their physicians’ knowledge.

Overnight “NW Angel” added this brilliant insight:

In those systems that are designed around the patients (like the 620,000 members of Group Health Cooperative) we don’t refer to them as either patients nor as consumers but as “members.” They literally own the system and the providers work on salary for them –

The result? They not only have a medical home model but an EHR that started with patients access, they have the highest quality and highest patient and provider satisfaction scores in the area (Washington).

So this article frames the question in the wrong way  – it isn’t a choice between patients and consumers but between people who are part of their care team and those that aren’t.

This morning SPM member and awesome advocacy expert Trisha Torrey of Every Patient’s Advocate added this, reflecting both her business experience and her broad knowledge of the patient reality: (emphasis added)

Patients cannot function effectively as consumers for at least three important reasons:

1. Because we do not control the money transaction.  If we have insurance, then the insurer defines and controls the transaction, but the transaction itself may have been driven by a greedy provider who knows he will be paid by the test or procedure. If we have a high deductible plan or no insurance, we have no real access to a specific provider’s pricing. Even if we can find a list of charges, we find out later that there were all kinds of hidden charges we knew nothing about.

2. No one ever teaches us to be patients. Studies show that when we have the information we need, we can make smart choices.  But when is that information forthcoming?  Who provides it unless we ask?  As Dave said above – many of us are more than willing to take the responsibility we need to take. But because we’ve spent a lifetime being buffeted by an opaque system, in too many cases we don’t even know the questions to ask.

Third – at the very time in our lives we are required to step up and take that responsibility for our decision making, we are highly vulnerable. Granted, some decisions are fairly simple, or have seemingly limited options to choose from. Emergency decisions are one thing – but being railroaded is another and too often, patients are railroaded without even realizing it. See reasons #1 and #2.

The key to success is not to redefine the role of the patient in an effort to jettison responsibility.  The key is to help patients become invested in the process, teaching them how to make the best decisions for themselves, for their health and their wallets, too. If we are to continue a for-profit healthcare system while trying to cut costs, we need to, at least, level the playing field.

If you have concrete examples you can post there of patients who did excel – against odds in an unsupportive system, with great results – please do post them there.

But please don’t attack the writers – like Trisha and “NW Angel,” shed light. Remember that there was a day when you were new to healthcare and especially the patient experience.

Thanks to Twitter cancer friend @Chaos2Clarity for the tip last night.



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