Medical Research: By Law, It’s All About You

Your tax dollars fund medical research, but your say in what research actually gets done is exactly…zero.

Now, a new, Congressionally-authorized nonprofit born of the Affordable Care Act is proposing a different model: What if medical research were driven not just by profit-seeking drug makers or academic researchers with niche interests? What if, instead, research pursuits bubbled up from patients and their caregivers based on the concerns, confusion and questions that arise from real-life dealings with the health care system?


The Patient-Centered Outcomes Research Institute (PCORI) is the first, and clearly the most ambitious, publicly-funded effort to integrate patients and caregivers more directly in figuring out what works in health care. They’ll be able to push for what they need most, whether it’s more effective asthma treatments, clearer information on childhood vaccines or preventing falls among the elderly.

Eventually, a new body of evidence — by, about and for patients — will be easily accessible to anyone trying to navigate the health care system or seeking reliable data on preventing, diagnosing or treating an illness, says PCORI’s executive director Dr. Joe Selby, formerly the director of research for Kaiser Permanente, Northern California..

What’s Best For Me?

In a radical rethinking of what constitutes “health research,” patients are central to this endeavor and participate in every stage of the process: from generating and selecting study topics to determining the most effective strategies for communicating the results (not everyone subscribes to The New England Journal of Medicine, the thinking goes). PCORI has already spent $31 million to fund 50 pilot projects (out of 856 submitted) and it estimates $427 million in research commitments will be made by the end of 2013. By the close of the decade, PCORI expects to invest about $3 billion in research.

Currently the group is soliciting specific questions from patients and caregivers nationwide that might ultimately be developed into research projects. The questions can be on anything with a clinical focus: basically, any question that begins: “What’s best for someone like me?” qualifies. Continue reading

The Problem With Patients As Consumers

What happens when patients are overloaded with complex medical information?

Here’s a thoughtful piece in the Harvard Business Review on the very real problems that emerge when patients are treated as consumers, with boatloads of medical information dumped on them willy-nilly. (Thanks to the Mass. Medical Society for tweeting.)

The authors, Augusta Meill and Gianna Ericson, both with the consulting firm Continuum, offer several examples of patient empowerment backfiring when critical data isn’t delivered with appropriate professional guidance. They write:

The “empowered patient” movement encourages patients to become hyper-informed and to take control over their care. But providing greater information, access and autonomy — so often successful in consumer settings — does not necessarily drive better care or experience. Consider these cases:

–An unexplained black-out sent a 61-year-old Boston woman to the emergency room and set off a flurry of visits to specialists to uncover the cause. Each doctor needed records of the diagnostics from previous visits. Hospital policy, however, required that patient data be released only to the patient, meaning she had to return to the hospital prior to any new specialist visit. Requiring her to control the information flow burdened her in the midst of a medical crisis. Continue reading

Patient ‘Navigators,’ Including One In Cambridge

You have to read pretty far down in today’s interesting Wall Street Journal story about the growing guild of “navigators” who help patients find their way through the health care system, but eventually you get to our local angle:

Sheila Profenna’s doctor had been telling her to get a colonoscopy for three or four years. But the 54-year-old says she was scared of the procedure and canceled two or three appointments. After she had some worrisome symptoms earlier this year, her doctor at Cambridge Health Alliance, a Boston-area public health-care system, put Ms. Profenna in touch with patient navigator Jennifer Murillo.

Ms. Murillo offered Ms. Profenna useful tips on swallowing the solution patients have to take to cleanse their bowels before the procedure, such as mixing it with a lemon-flavored drink. Ms. Profenna says she was concerned at first that it didn’t seem to be working, and called Ms. Murillo that day about a dozen times. On the day of Ms. Profenna’s colonoscopy, Ms. Murillo arranged transportation to and from the appointment. “I didn’t have to be alone and scared, and Jennifer made me feel as if I had someone to hold my hand through the whole thing,” says Ms. Profenna, whose test didn’t turn up any problems.

Such navigators are proliferating, the Journal reports:

Hospitals around the country have been adding patient-navigation services in recent years, helped by funding from governments and private groups. The Commission on Cancer, part of the American College of Surgeons, issued new standards this year that will require cancer centers to offer patient-navigation services by 2015 to meet accreditation requirements.

Several studies have shown that navigation services increase participation in cancer screening and adherence to follow-up care.

Consumer Health Quality Council Sets Sights On Next Phase Of Reform

Public Health commissioner John Auerbach speaks at the council's 5th anniversary

The Health Care For All event yesterday was mainly to celebrate the first five years of the Consumer Health Quality Council, which aims to help patients and advocates influence health care in Massachusetts.

But there were also a few “forward-looking statements,” as publicly held companies like to put it. Amy Whitcomb Slemmer, head of Health Care For All, said:

This morning is an opportunity to reflect on the last five years, and to look ahead to the work before the Consumer Health Quality Council. We will expand the Council membership and their voices will continue to play a vital role in the next wave of health reform – as we transform our health care delivery system so that it is focused on patients and our overall health. The Consumer Health Quality Council will be in the midst of that work here at HCFA and around the state.

This also seems a good moment to share a few of their cool links:

Patient and Family Advisory Councils — Does your hospital have one?

Have you had a negative experience at a hospital, and do you need help navigating its customer service? Check out The Assertive Patient.

And, frightening but important, the council has created a “story bank” of patients harmed by their treatments. Check it out here.