Group to Put Patient Voice Into Measures of Health Care Performance


The elements of PatientsLikeMe are coming together for the benefit of future patients.

At the American College of Cardiology meeting in March this year, a major presentation on ticagrelor, a drug to treat acute coronary syndrome, found the drug reduced the likelihood of heart attacks but might produce “minor bleeding.”

The scientist who presented the findings downplayed the concerns, saying there was a big difference between “intracranial hemorrhage” and a nosebleed. Fast forward to November at the American Heart Association meeting, when a follow-up presentation found that one-third of the patients in the ticagrelor study stopped taking the drug—even though it “worked.”

Researchers suspect too many found that daily nosebleed insufferable.

“Often in trials we categorize events as nonserious, but they have importance for patients,” said Marc Bonaca, MD, of Brigham and Women’s Hospital. It’s the kind of thing researchers could have learned before they published the first set of results in the New England Journal of Medicine.

But while doctors tallied up “adverse events,” no one measured how patients felt about the nosebleeds. The network PatientsLikeMe hopes to put that patient voice in the equation.

For a decade now, the group has provided a platform for patients to connect with others who are dealing with the same disease, while assembling lots of valuable data that has been of great use to regulators, pharmaceutical manufacturers, and researchers.

Co-founder and President Ben Heywood, who created PatientsLikeMe after his brother Stephen was diagnosed with amyotrophic lateral sclerosis, or ALS, has seen many success stories, but the biggest one may be yet to come: creating validated measures that would ensure the patient’s voice plays a role in whether drug makers, physicians, and hospitals get paid.

The elements of PatientsLikeMe are coming together for the benefit of future patients, as the group makes use of a $900,000 grant from the Robert Wood Johnson Foundation. Part of the grant will allow PatientsLikeMe to spend the next year working with the National Quality Forum (NQF), the organization best known for establishing measures of health care quality, to create ways to measure how healthcare works through a patient’s eyes or experiences.

The idea of ensuring that patient input helps hold the healthcare system accountable, through the use of “patient-reported outcome measures,” or PROMs, has gained momentum in recent years, as CMS and commercial payers put more emphasis on value-based payment models. Creating a validated measure of patient-reported outcomes has huge implications, Heywood said in an interview with The American Journal of Managed Care.

“It puts patient input into the broader realm of patient-generated evidence, and that’s a really important thing; that really allows the patient voice to be added to scalable medical evidence,” unfiltered by interpretation by an investigator or some other third party.

This opens the door to doing more to rewarding doctors and hospitals that do the best job of getting people well—or keep them from becoming ill. It would seem logical to include measures that reflect a satisfied patient, one who feels informed, free of pain, and presented with choices that make sense.

PatientsLikeMe took a huge leap forward in shaping health outcomes research in 2013, when RWJF funded the Open Research Exchange (ORE). Through this initiative, PatientLikeMe’s 380,000 members help research to create, test and validate new measures.

In short, no longer do the “experts” write the questions and patients give their answers—the patients, who are the experts in receiving health care, help shape what the questions will be. That ORE platform will be foundation for the work with NQF. In deciding what measures to use for gauging patient-reported outcomes, the first step will involve asking patients what’s important to them.

From there, PatientsLikeMe will develop measures and test them, including in clinical settings. Heywood said PatientsLikeMe will work through NQF’s new Measure Incubator, an initiative that connects groups with those skilled at developing measures and helps them do so in a fraction of the time it would otherwise take.

The goal is produce useful measures of patient experience, which could deployed in the real world and tied to reimbursement, perhaps on a schedule to help CMS achieve its goal of linking 50% of payments to alternate payment models by 2018. Of course, it would be up to NQF to endorse any measure that might arise from the work done by PatientsLikeMe, which Heywood emphasized.

He’s full of enthusiasm as he talks about the success stories at PatientsLikeMe—like the multiple sclerosis patient who used shared data to get reimbursement for an off-label use of a therapy, or the way FDA is using data as an ancillary source of information on drug safety.

What’s notable, Heywood said, is the way the science around patient-reported outcomes is growing. There’s a framework taking shape for gathering patient-reported data, creating measures, and testing them in both a virtual and a clinical setting.

The goal is to get to the point that what matters to patients helps drive the development of healthcare products and services.

“We’re bringing patients into the equation,” Heywood said.

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