Clinical Data Sourcing, Help Change the Healthcare System

Riding the Wave of Change:

How You Can Help Change the Healthcare System

Clinical Data Sourcing

Part 2 in a Series

In 2011, the National Academies convened a workshop with the Institute of Medicine and the National Academy of Engineering to discuss how to create a learning healthcare system. While not all of their recommendations are likely to be implemented, their 340-page report provides a good idea of some changes you can expect to see. A learning system means not only top down, which has been the norm, but also bottom up. This means a tremendous opportunity for patients to get their voices heard and to become a more active part of the system. This is particularly useful in conditions like carpal tunnel syndrome, where medical science has yet to learn the causes behind these disabling syndromes.

As in part 1 of the series, the culture of healthcare is to blame for the current barriers to effective use of data. Michael D. Chase, M.D. of Kaiser Permanente in Colorado describes a “slow-to-evolve team-based approach to care” that keeps clinical evidence from being collected and considered in treatment guidelines. In the case of RSIs, I believe this is one of the biggest reasons for such poor patient outcomes: the guidelines are woefully behind clinical data, while research is being co-opted by parties who's direct financial interests cannot be met in finding an effective treatment. The current guidelines for treating carpal tunnel syndrome is rest and bracing for a few weeks, followed by surgery, leaving a large group of patients inadequately treated.

Brent C. James, executive director of the Institute for Health Care Delivery Research and vice president of medical research and continuing medical education at Intermountain Healthcare says there's a large degree of “clinical uncertainty” simply because clinical data has historically been treated as unscientific and therefore never been collected in any useful way.

W. Dale Compton, Professor (Emeritus) of Industrial Engineering at Purdue University, says it's vital that we have “the capacity to mine that data for knowledge.” Dr. 
James N. Weinstein says
“It is important to note that clinical work doesn’t have to be done at the expense of scholarly work. They should be and need to be done together.” This technique is also known as crowdsourcing, and I give a wonderful example of a medical application in my book, where a new cancer drug was developed far quicker and far cheaper than the traditional route using this technique. The same could be applied with RSIs.

The Dartmouth Institute for Health Policy emphasizes that clinical research would “contribute powerfully to a learning healthcare system.” In their report, they cite a back pain patient case study, a notoriously difficult ailment to treat, costing the United States billions every year. The Dartmouth team suggests a “feed-forward information environment with real-time feedback” they call a Collaboratory and I’m all for it. Feed forward collects patient data in real time as care is delivered; “feedback” accumulates historical data across populations of patients into a database that can be used to conduct a multitude of survey studies.

It will take some time before the ideas presented at the National Academies’ workshop will be implemented into the system, but RSI patients can begin that process immediately. While on the board of directors of the Los Angeles Repetitive Strain Injury Support Group, we recognized quickly that our 150 or so members represented an informal statistical sample opportunity that no one was tapping into. Unfortunately, our efforts to be heard fell on deaf ears, but clearly we were ahead of our time. I call on researchers and support groups around the country to actively connect and develop a statistical data sample of RSI sufferers. Even if you are not part of a support group, you can talk to your doctor about instituting such a program in his or her practice. The Affordable Care Act has built-in incentives to make it financially attractive. 

@JillGambaro is the author of The Truth About Carpal Tunnel Syndrome. Through her book, Facebook page, this blog and her LinkedIn blog, she advocates for patient engagement and employee engagement to resolve carpal tunnel syndrome and keep everyone working healthy.

Next time: Part 3: How You Can Help Change the Healthcare System: Application of Evidence/Standards of Care/Treatment Guidelines