Originally published on U.S. News and World Report.
We spend a lot of time at Global Healthy Living Foundation thinking about chronic disease – its impact on people, families, communities and countries. For many of us, a chronic disease is a struggle between managing the day-to-day and dreaming about a future where discoveries lead us to better health. Living with challenges from a chronic disease fuels our hope that during our lifetime, better treatments – or cures (yes, even cures!) – will be discovered. The advances that have been made with technology amplify this hope, and today, technology directly intersects with medicine, science and communication advances. The result? We’re able to harness the power of our health information to participate in research more efficiently, dramatically quicker, much less expensively, with results that matter most and with far greater power than previously possible.
And we just got started.
It all began a few years ago, when the Patient-Centered Outcomes Research Institute was formed, and out of it the National Patient-Centered Research Network was created. PCORI is an independent, non-profit research funder, authorized by Congress to support studies of which health care options work best, for whom and under what circumstances – so naturally GHLF was keen to get involved. A massive effort got underway to bring patients, health care providers and health systems together for an unprecedented data-driven research project. Patients and their families are now at the center of the research, because patients and their families hold countless clues those researchers, doctors and scientists can incorporate into their work and their decisions. Who are we as people living with these conditions, and how are we impacted by its day-to-day (and the treatments we take)? These are the most meaningful clues that we can contribute to science.
This is an important paradigm shift for so many reasons, but mainly because traditional methods of conducting health research haven’t focused on the questions and outcomes that matter most to us patients, our families or our doctors. What we know about diseases is not applied to clinical practice. Old paradigm research is done in a very sterile vacuum, and ignores the ‘humanity’ behind each subject or participant. Patient-centered research thrusts life and reality into the equation, measuring how patients manage and also respond to their disease and its treatments. PCORnet was designed to draw upon the wealth of useful information generated during patients’ routine doctor visits, centered on patients’ needs and priorities, while respecting their data security.
It’s as exciting as it sounds. And no, there isn’t a “catch.”
Here’s how it will work: PCORnet has linked 29 individual networks to large amounts of clinical and health data that are embedded in our electronic health records. This is broken down to 18 “patient-powered research networks” and 11 clinical data networks (health systems). The “rules of engagement” that patients established clearly dictate that everyone who participates does so willingly, and is protected with their personal identifying information removed. Who you are as a person is preserved, but who you are as someone one can personally track or identify, is removed. Information about our disease and how we’re managing it gets pooled and is accessed by researchers (although there is no “data warehouse” where everyone’s information is collectively stored). Instead, the individual networks, ensuring the most control and most conservative approach to security, manage the data privacy and security measures. So it’s safe.
What does this mean in practical terms? Take rheumatoid arthritis and related forms of arthritis as an example. It’s the best example I can share, because I was involved in its development. “Arthritis Power” is a patient-powered research network formed to efficiently track patient reported outcomes of people living with autoimmune arthritis (such as rheumatoid arthritis) and related conditions – using our computers and smartphones. Arthritis Power was designed to help researchers understand how we respond to different treatments over time, and gives us an opportunity to propose future questions that the community can help answer (hence, the “patient-powered” component). Anyone living with arthritis should participate in this initiative because it was designed for patients and by patients – to help the world understand us better. This is a “node” of the PCORnet network, so Arthritis Power participants will help researchers understand their condition better, and when linked with networks that include nearly 100 other conditions, will begin to unlock clues never before discoverable, in relation to “co-morbidities” (also known as “the other diseases that come knocking when we get diagnosed with something”).
Imagine the impact we will have, when we all lend key measures of how we’re managing our diseases, and that information is aggregated and analyzed by the experts – in real time!
The promise of PCORnet means that soon our doctors will be able to see how hundreds of thousands of other patients, just like us, are responding to a diverse range of approaches in our care and disease management. This is the new meaning of patient-centered. No more decisions made based on a doctor’s “best guess” or data from a limited number of subjects in a very rigid study. This is real-time information that helps everyone get better, quicker.
PCORnet is a breakthrough for everyone, because patients are now involved in all phases of research, and that includes being privy to the results. “How we’re doing” as patients is no longer sealed in a vault of other results, and instead will be applied in real-time to the decisions we make with our doctors about how to manage our conditions – today and in the future.
If you or someone you know suffers from a chronic disease – as ubiquitous as high cholesterol, heart disorders, arthritis, sleep apnea, breast cancer, multiple sclerosis, COPD; or as rare as vasculitis, Duchenne muscular dystrophy or any of the other nearly 100 conditions that PCORnet has an interest in learning more about, it’s your duty to participate in this new approach to research. Millions of people have stepped forward to participate in key research that has gotten us this far. What will you do in order to help the next generation burdened by these diseases? Give technology a chance to live up to its promise.
To learn more about PCORnet or the individual networks within it, visit PCORnet.org.