A patient-driven approach to generating healthcare data

While much of the debate about improving the United States’ healthcare system — one of the world’s largest — has centered around companies and government figures, the social networking website Patients Like Me has tried to approach the complex and often vexing issue by putting more information in the hands of individual patients, and inviting them to share. Co-founder Ben Heywood, currently the President and Director of Patients Like Me, believes a reassessment of privacy and better use of data is necessary to take healthcare into the 21st century.

A family tragedy led to the founding of Patients Like Me

Unfortunately my brother got diagnosed with Lou Gehrig’s disease back in 1999, so my family got really involved in ALS research. So my brother, Jeff Kohl and I decided to start Patients Like Me out of the experience of caring for our brother, researching ALS and talking to other patients about what they were going through. We found that there was a real dearth of information, for everyone, about what happened to “patients like me;” outcomes, symptoms, treatments that patients were taking. We saw there was really no good way of finding and sharing that information. Seeing that need, we started a registry on ALS in 2004, launched the first site in 2006 and have been growing ever since.
One of the core beliefs of Patients Like Me is that “information can change the course of a disease.”
It’s all about getting the right treatment for the right patient. In the healthcare industry as a whole, there just isn’t data that allows one to do that; it’s just not part of the system. Part of what the communities we create on our site do is help share that information. Our data sets have quickly become some of the largest in the world. We had a researcher on fibro myalgia talk to our community about eight months after our launch and he said “you have the richest data set on fibro myalgia anywhere in the world.”

How data can help solve the healthcare system’s problems

These data sets allow you to begin modeling a disease, so you can really understand what happens to an individual patient. That way, when something new comes on the market — a new drug, a new product, a biomarker, etc. — you can rapidly understand whether or not it works, and for which patients. One of the big problems with healthcare is that we don’t measure in the right ways. If you think about what you do in business or in your everyday life, one of the first steps is measurement. To measure is to know. When healthcare does measure lots of stuff, it doesn’t measure what’s ultimately most important: the patient’s quality of life. In the realm that we deal most in — chronic conditions — there’s no measurement over time. The data our patients provide becomes an incredible source for measuring value, then you can spend healthcare dollars where they’re most valuable instead of just spending healthcare dollars, which is what happens now. Patients can browse and use the data to better understand their own — or others’ — conditions, and the data can prove useful to other parts of the healthcare system as well.
Sometimes being able to see other patients’ experiences acts almost like a kind of intervention; 20 percent of people in our mood disorders community, for example, actually report needing less care because of being a member of patients like me. That lowers healthcare dollars.
Primarily we’re also partnering with pharmaceutical companies who really want to understand — from a clinical standpoint and a market standpoint — how patients are experiencing their disease and how they perceive and utilize their products and services. This allows the company to improve their product; it’s a way of partnering companies and patients together around the data that’s being shared in the community.
People are used to being very private about their healthcare situation, and there are laws that back that up, making access to healthcare information stricter than almost any other sort of record. But there are issues with that mentality.
Every day, millions and millions of dollars are spent, trying treatments, whether they’re old and true methods or newer, more experimental ones. But often we don’t learn from all that trial-and-error, because this data isn’t collected. Even when it is collected, this important information is usually kept siloed in hospitals or universities. The reality is, there’s tremendous value in sharing that information.
All of these privacy protections that have been put in place are actually, as a society, reducing our ability to further research disease states, reduce healthcare costs, and have real conversations about the tradeoffs of treatments for different diseases.
The beauty behind our openness philosophy is that people learn that when they start sharing what happens to “patients like me” they can learn about their own healthcare and help the whole society.

Social networking improves patients’ wellbeing

Some of these diseases are very isolating, and with that isolation comes depression, which only worsens the condition. Having a social connection is healing in and of itself. Knowing that sharing this information is helping yourself and others is another way it improves a patient’s quality of life.
Also, we hear all the time from patients in our multiple sclerosis community, for example, that “the rest of the people in my life just don’t understand what I’m going through.” Just having other people who do understand the condition can really be an outlet for some of the frustration of dealing with these serious illnesses.

Striking a balance between selling and using data while protecting patients

Obviously, we’re on the forefront of this field, so finding a balance is very tricky and we work hard to maintain it. We let patients know, as best we can, the risks of sharing information so they can decide what they do or don’t want to share. In keeping with our philosophy, the patient is ultimately in control of how much they share.
In our partnerships, we explicitly say this data cannot be re-identified. They cannot use our website or other data sets to re-identify our patients. That way they’re just using the data to improve their business, and they are contractually obligated to not do some of the things they could do quite easily if they re-identified the data and attached it to individual patients.

Expanding the community

Our goal, long term, is to open Patients Like Me up to as many diseases as possible; currently, we have 19 conditions and 80,000 patients. While that’s a good start, we really want to open this community up to a wider audience. Our goal is a million patients in the next couple of years and give every last one of those patients tools to better manage and understand their illness.

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