Dave deBronkart concedes that he should be dead.

Diagnosed with stage IV kidney cancer in 2007, he was told he had about about six months to live. Instead of relying solely on his doctor’s advice, deBronkart sought expertise online. Online patient communities are focused on particular diseases and they share and disseminate the latest information as it becomes available. In many cases these communities know about the latest research before clinicians do. And when deBronkart’s kidney cancer patient community found something that could be helpful in his care, deBronkart showed no fear in sharing that information with his physician. Those conversations helped his doctor save his life.

“Everyone performs better when they’re informed better,” said deBronkart, who went on to become the health care blogger, speaker and advocate better known these days as “e-patient Dave.”

DeBronkart was one of the keynote speakers during the recent SAS Health Care & Life Sciences conference at SAS’s Cary headquarters that focused on big data.  He took a some time to share his thoughts with WRAL Tech Wire on the growth of big data in health care and how data is changing how doctors and patients interact. The interview was lightly edited for length and clarity.

What does it mean to be an engaged patient?

This is the big cultural shift that’s happening in medicine. The traditional view is that the wizards — and I’m all in favor of medical wizards, real medical wizards saved my life –know all the magic stuff and the rest of us can’t possibly know anything. And to a large extent, this has shifted in the last 20 years because of the Internet, which has given us access to information. An engaged patient is involved in the conversation, seeking to understand what they can do. A disengaged patient views medicine as if they’re a car in a car wash. You roll the windows up and you get things done to you. The culture challenge is that not only do a lot of patients not understand that that’s sensible for them to be thinking for themselves, but a lot of clinicians have been acculturated ever since medical school that it’s their responsibility to know everything. If they don’t, give the patient confidence, act like they know everything. Because of the cultural expectation, it’s a real insult if the patient does know something useful but the doctor or wants to understand for themselves the reason for a decision.

What are the business challenges to this data revolution?

The big challenge is that so much of today’s medical institutions are an intermediary. They are the ones who aggregate information and services and present them in a sense, for sale to the public. The threat is that to some extent, parts of that will no longer need to go through today’s institutions. That means that there are some people who work in those fields today, won’t be working for the same employer five years from now, 10 years from now. Some of those institutions will surely close. And we’re already seeing signs of those institutions fighting back, resisting the change. Any industry that’s in danger of going out of business tries to save its own butt. In Boston, where I’m from, as part of medical billing, there’s the physician professional fees but there’s also a facilities charge, which boils down to overhead. Some engaged consumers are saying, I’ll see my doctor in his or her own office so I don’t need the facilities charge. The hospital’s overhead – revenue – starts to shrink. So now, they’re attaching the facilities charge to that visit even if it’s not in their office. Organizations, companies are understandably trying to preserve their revenue stream. The war that lies ahead will be to see who manages to connect the consumer with the need, with new ways of getting value delivered.

How is business adjusting?

If you are involved in the money flow and more spending is good for you, you’ve got problems ahead. The IOM (Institute of Medicine) said last fall that we have to reduce total spending by one third, that’s $750 billion, which is more than anyone can comprehend. But for an innovator, that wants to be a couple of generations ahead… they will go to be there before everybody else realizes what’s happening. One of the ways that I survived is that I got information from a peer patient community. It’s democratizing not just of specific facts, but there’s also new types of value arising in consumer communities that simply don’t fit into the paradigm of academic medicine. The people here in this audience who understand really what disruption is should see into that and see ahead.

Technology has democratized access to information. But there’s so much out there. How does a patient manage it all?

Every time this has happened in any other industry the same question has come up. Believe me, the exact same question applies to doctors. There is far too much information for anyone to keep up on anymore. What we’re seeing now is that people just coming out of medical school take it for granted that what they were taught last month or last year might have changed. People who are my age, I’m 63, they can still be stuck in the idea that they got out of medical school fully trained.

So how can technology help us?

At a conference last week where I spoke, they were talking about when the information in the cockpit became overwhelming. More dials was not the answer. There’s just too much information. In every other industry, when there’s overwhelmingly more information, you display less. It’s about extracting the useful information from all that data and displaying that in a way that’s relevant and useful for the cognition of the pilot. So far, health IT, the understanding of data in medicine, is extremely primitive. The trick will be in analyzing all of the data and presenting it in a way that earns the attention of the observer – whether it’s a family member or a clinician. There’s tremendous opportunity for innovators to figure out how to do that because most of the people who work in medicine don’t get it yet.

[SAS ARCHIVE: Check out more than a decade of SAS stories as reported in WRALTechWire.]