Five Ways Data Influences Health

We are a nation awash in massive amounts of data—reams of information so large that special analytic tools are needed to collect, process, and interpret it. For health care, harnessing this data and making it public offers extraordinary promise for improving efficiency, raising quality, and improving health outcomes for millions of Americans.


Shining the Light on Hospital Pricing

In May, the Centers for Medicare and Medicaid Services (CMS) released a treasure trove of data representing average charges submitted by more than 3,300 hospitals for the 100 most common procedures, such as hip replacements, heart operations and pneumonia treatment.

The data revealed that most hospitals bill Medicare for, on average, four times more than the insurer actually reimburses for a particular procedure. Prices also vary wildly between hospitals—even those located in the same city. For example, heart-failure treatment ranges from $9,000 to $51,000 in Jackson, Miss.; the price of joint replacement in New York City goes for between $15,000 and $155,000.

Making this data public gives consumers—especially the uninsured and those with hefty deductibles—a way to compare costs in their communities and puts pressure on hospitals to address extreme variation in pricing. As Risa Lavizzo-Mourey, MD, RWJF’s president and CEO, puts it, "Transformation of the health care delivery system cannot occur without greater price transparency."

View CMS hospital pricing data

See the winners of the Hospital Price Transparency Challenge



Pharma Money and Your Doctor

Would you like to know if your doctor is on the payroll of the company that makes a new drug or medical device he or she is recommending? What if a drug company is paying your doctor to speak about the benefits of that heart or diabetes medication at medical conferences?

Studies show that financial relationships with drug or medical device makers can influence doctors’ treatment choices and drive up the cost of health care. In August, the Physician Payment Sunshine Act will require drug and medical device manufacturers to begin collecting data on all payments and gifts over $10 made to doctors and teaching hospitals. By September 2014, CMS will make this data public, lifting the veil of secrecy that can surround these financial relationships.

The hope is that the Sunshine data will foster better communication between patients and their doctors, increase trust, and put more transparency in treatment decisions.

View Health Affairs blog post on benefits of Sunshine Act to patients




Harnessing the Power of Electronic Medical Records

The transformation from paper records forever entombed in files to the EMR has opened the floodgates, releasing a torrent of data about patient characteristics, disease, prevention and treatments that can now be readily analyzed. At the individual level, EMRs help doctors monitor patients with chronic diseases like diabetes for example, alerting them when prescriptions need refilling, when test results signify a problem or when a patient needs a follow-up visit after she leaves the hospital.

At the community level, EMR data can reveal higher incidence of asthma or infectious diseases in specific regions and can identify areas where preventive care is lacking. Merging this data with other demographic information can help public health workers design new campaigns and outreach efforts that can improve local health.

Finally, crunching data from tens of millions of EMRs is, ironically, the key to identifying the drugs, devices and procedures that work best for individual patients. From big data comes clinical precision and the end of one-size-fits-all care.

Learn how EMRs are affecting diabetes care

 A medical assistant takes a patient's temperature.



Data Offers Unique Insights on Treatment and Outcomes

The website PatientsLikeMe is a free patient network that allows some 200,000 people living with more than 1,500 conditions to interact with each other about drugs, dosages, symptoms and treatments. It is also the world’s largest real-time research platform, allowing companies, researchers and government agencies to gain insights on how drugs work once they are out on the market, how patients live with illness, and how to create more effective and safer treatments.

One important goal for PatientsLikeMe is empowerment; providing a resource that helps people make informed choices about treatment and care based on the actual, quantified experience of thousands of patients already living with a disease.

Another goal of harnessing this data is to help researchers develop health outcome measures that better reflect patients’ experiences with a disease in the real world, and to assess health and quality of life in ways that matter to patients.

Learn more about how PatientsLikeMe is calling for researcher participation


A chart with post it stickers on it.



Giving Patients Ownership of Their Medical Records

The idea is simple: Patients gain easy access to secure digital medical records offered by their doctors, insurers, pharmacy, and other providers with the click of a button. This includes information about prescription drugs, tests, lab results, allergies, adverse reactions, and upcoming appointments.

The Blue Button concept was pioneered by the U.S. Department of Veteran's Affairs' health system, but now more than 80 million Americans can use the on-screen button to download their health information and share it with providers.

Dozens of digital apps are being developed to make personal health data even more meaningful to patients—for example, one app combines updated EMR data from multiple providers in one place, while another extracts prescription information from the records and provides refill and adherence reminders. A demonstration project fostered by RWJF advances the idea of so-called "open notes," the practice of giving people access to view their doctor’s medical notes.

The Blue Button and related ideas are spurring patient empowerment by helping people take an active and engaged role in their care.

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