Information Technology Gives Patients Control of Their Health Care

| November 8, 2013

E-health button on keyboardHealth-care spending is out of control. While all the attention is focused on the rollout of the new government Health Insurance Exchanges, private information technology is starting to offer an alternative way to better health, and maybe radically reduced health-care costs.

At the Christian Professional Network Conference of October 24, 2013, keynote speaker Scott Rasmussen noted that while politicians argue over the merits of the Affordable Care Act, the real changes in health care will be made by Main Street Americans, as the marketplace offers new technologies for information sharing that will dramatically change how health care is delivered.

The current issue of the MIT Technology Review highlighted this same issue in a series of articles discussing how the introduction of information technology into the core operations of medical care could make health care much more “retail” — health care provided by big institutions, in a more standardized fashion, with less overall cost, but less of a personal touch.

Health care is an information intensive industry. But doctors still often rely on their own experience, rather than the experience of millions of patients who have seen thousands of doctors. Now information is becoming much more accessible to patients, and that will change the world of health care. Sites such as Web-MD already provide basic diagnostic information, and information sharing among patients is coming on line.

The MIT Technology Review includes an article by Ted Greenwald that highlights a specific example of how this new technology is developing: Crohnology.com is an online community of men and women with Crohn’s disease, where more than 4,000 patients in 66 countries collaborate online to learn which treatments — drugs, diets, acupuncture, meditation, even do-it-yourself infusions of intestinal parasites — bring the most relief.

Crohnology.com is one of the most closely watched experiments in digital health. The site is at the vanguard of the growing “e-patient” movement that is letting patients take control over their decisions and behavior in ways that could fundamentally change the economics of health care. Greenwald reported:

Experts say when patients learn from each other, they tend to get fewer tests, make fewer doctors’ visits, and also demand better treatment. “It can lead to better quality, which in many cases will be way more affordable,” says Bob Kocher, an oncologist and former adviser to the Obama administration on health policy.

Also, sites like Crohnology.com allow patients to share data about their treatments and results, independent of major providers motivated by profit. Billions of dollars are at stake in the testing of drugs in elaborate clinical trials, but would life changes (such as a dietary change) bring the same or a better result? Doctors often don’t know because no one has studied the question.

As a patient, it’s extremely important to me to get the right information to treat my condition that’s unbiased by economics,” says Sean Ahrens, who created Crohnology.com. “Unfortunately that’s not the world we live in.” He says he built the site “to give the power to patients to study things that weren’t currently studied.”

On Crohnology.com members enter their medical histories on the site, track their symptoms and treatments, and answer questionnaires and can also initiate site-wide studies. Patients use the site to adjust their diet and activity: for example, site members seem to agree that beer is the worst thing a Crohn’s patient can consume.

Sites like Crohnology.com could contribute to lowering expenditures on unnecessary treatments, or ones that work poorly in the real world. Today, Americans spent more than 250% on health care per person than do citizens of other developed nations. But if patients can take more control over their own care and treatment, there can be dramatic changes in an industry long resistant to change. 

 


Category: Technology