It’s 2014, and it’s a significant year for PatientsLikeMe and our members. Later this year we’ll mark the 10th anniversary of our founding. As we reflect on where we’ve come from and where we’re going, there’s one thing that has never changed—our commitment to make sure your real-world experiences are a central part of improving healthcare.
Changing medicine for the better is a journey. This year, we want all of you to join us on that journey, every step of the way. That’s why we’re starting a new initiative to get even more patient-reported data. Co-founder Jamie Heywood talks about the idea of data donation, and all the good it can do.
Wow, ten years. That’s a long time. What do you think are some of the most significant accomplishments of the last decade?
It’s been an amazing journey. We started this site so people, including my brother Stephen, could find information that helps them live better day-to-day and contribute data to research. We wanted to shake medicine up, to make it more about the patient, to help people connect with each other and see what their options were and take control of their health. At the heart of that has been this underlying goal to make patient experiences matter. We thought we could create a site that would make people happy with features like forums or condition trackers, but also allow them to contribute to research every time they logged in. When we started out, that had never been done before. We took a giant leap forward in validating patient-reported health outcomes when we announced the results of the lithium study in 2011, which showed the efficacy of lithium carbonate on ALS. That was the first time patient-reported data collected via a website was used to evaluate a treatment in real-time and to refute the results of a formal clinical trial. Since then, everything’s changed. Now we’re hearing more companies in the industry talk about the patient voice and the importance of listening to it. Together with our members, we’re making them focus on what matters most—the patients.
You’re talking a lot lately about “donating your data for good.” What’s that all about?
We created a kind of public service announcement for our members and the general public to showcase the good your health data can do – for you, for others, and for research. The more patient data we can get into the hands of researchers, the more we’ll learn about how to improve treatments and care. Every time you tell us how you’re doing, or add information about a symptom or treatment to your profile, or participate in a survey, you’re telling researchers what they need to know about what it’s like to live with a disease. I’d love to see every member update the information in their profile every week. If you can do that, we can really make a difference. If you don’t, we wait – we wait for more and more people to take part in research studies, one study at a time, year over year. Some people with some conditions don’t have time to wait. Some people don’t want to wait. I think we can change that, but it takes a village. We’re all in this together, and the only way anyone will learn more and really make an impact on healthcare is if everyone pitches in.
What impact has member-reported data had on research to date?
A tremendous impact! Our research team has published more than 40 publications in scientific journals using the data and experiences that members share on the site. We started in ALS and took the patient voice to the forefront in that disease, highlighting under-recognized symptoms and, with the help of an inspirational ALS patient named Cathy Wolf, upgrading the ALS measurement scale. In MS, we’ve had strong partnerships with pharmaceutical manufacturers to help them develop better products and services that have been informed by patients. For conditions like fibromyalgia, mood disorders, and HIV, we have published findings on how the support of patients like you can have a therapeutic effect on improving outcomes. In epilepsy, we found that members who have made more friends on the site see better clinical outcomes, too. And we’ve helped change healthcare policy working with the Institute of Medicine (IOM) and many other government entities. All of this fantastic work was made possible by the active engagement of our patients, the data they make available on their profiles, and their willingness to share openly to benefit one another.
What is your ultimate vision of what patient-reported data can do?
I think of PatientsLikeMe as a dynamic learning system, one that can learn in real-time from the experience of every patient in the world. We want that system to be with you as you and your doctor talk about your treatment plan, to give you the most current data to help you understand where you are in your illness, to draw on other patients’ experiences so that you can create the best path forward based on your goals. That’s the impact patient-reported data can have on every patient’s life, and why we need to get as much of it as possible.
Donating data and sharing experiences is essential. That is how I finally learned not only what I needed to recover from a string of mystery diseases and conditions over 22 years – two decades of fibromyalgia and elusive oddities, then over a year of escalating multi-systemic, serious illnesses, conditions and maladies that had everyone stumped, and me looking for the exit doors.
By chance and persistence an integrative doctor heard a conference presentation about symptoms like mine being caused by reactivity to dental materials, especially mercury in amalgam, for genetically susceptible children and adults. That knowledge turned out to be the key to a full recovery as I have rebuilt my strength, vitality, focus, joy, and high level of effectiveness.
I’ve been learning and growing and working in a vibrant, caring community of injured mercury poisoned patients, and learning from biologic dentists, doctors, scientists and staff through their professional association, the International Academy of Oral Medicine & Toxicology. Not surprisingly, there is some overlap between the professionals and the injured patients. Somewhat surprisingly, these injured patients’ diagnoses, diseases and conditions from which they are recovering strongly suggest there are common causes of a raft of chronic diseases. Not necessarily a sole or exclusive cause, but a common cause, catalyst and trigger.
I am ready now to reach out and engage others like me, Patients Like Me, with this working hypothesis, that in many cases, the common causes of chronic diseases are a combination of genetic susceptibility and exposure to mercury, other heavy metals and toxins. It makes sense, our bodies and immune systems weren’t born or evolved to handle these things, they are foreign to our cells. These triggers cause inflammation unless we have really strong systems for things like methylation and detoxification. Inflammation is the root of chronic disease processes.
If this pans out, and as it proceeds, we are going to need a common name to refer to the cluster of common diseases. I’d appreciate any feedback on the following: 1) Acquired Neurological Deficiency Syndrome (ANDS) or 2) Acquired Nerve & Immune Dysfunction Syndrome (ANIDS).