LYMEPOLICYWONK: My speech at MedX on Lyme disease and patient-centered big data research

ByDorothy Leland

This past weekend, I was honored to speak at the Stanford MedX conference and I will post a video of the speech on our website when it comes out. In the meantime, here is an overview of my topic—patient-powered big data research and the enormous promise it holds for Lyme disease.

Patient-powered research is conceived by patients, run by patients and fuels research designed to improve patients’ lives. The need for patient-powered big data research in Lyme disease is clear when we look at the meager history of  treatment trials conducted for chronic Lyme disease.

Even though there are over 100,000 cases of CHRONIC Lyme each year—three times more than hepatitis C – only three government treatment trials have ever been conducted. And those three trials didn’t look at treatments actually used by physicians treating chronic Lyme disease, but were instead limited to 90 days of a single form of antibiotics. And, they didn’t study ordinary patients. One screened over 32,000 patients to finally enroll just 23, who met the researchers’ highly specific criteria. Patients in these treatment trials are by definition not typical.

The last government treatment trial was over 15 years ago and it took four years to recruit, five to complete, seven to publish.  It cost nearly $5 million dollars. And there’s currently no research—not a single treatment study on chronic Lyme disease treatment– in the pipeline.

Patients with chronic Lyme disease can’t afford to wait for tomorrow’s research –which may never come. They have a worse quality of life than patients with multiple sclerosis; 43% can’t work and 20% are on disability.

Patients just want to get on with their lives. Lyme disease is an infectious disease—and like hepatitis C—we should be able to solve it. The problem is nobody is trying.

But today’s patients aren’t powerless. Patients are experts with assets. They have deep knowledge of their disease—online communities—and they have the most important research asset of all—their health data.  Today’s technology allows patients to pool their data to find answers– and it’s cheap, quick, and best of all—it looks at treatments patients actually receive from their doctors. This is real world research.

Here’s how it works. With lots of data, we begin to see important patterns. What treatments work the best?  Why do some patients respond to treatment and others don’t?

So I have to tell you, the truth is this – the people who will cure Lyme disease are the patients themselves. Why? Because they care deeply, are dogged in their pursuit of health, and because they won’t stop until they get it right! LymeDisease.org will be launching a patient-centered big data project for Lyme disease soon.  We’ll keep you posted.

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.

Dorothy Leland is a longtime advocate and researcher focused on Lyme disease education, policy awareness, and patient support. She has contributed to numerous publications and works closely with medical professionals and organizations to improve understanding and treatment of tick-borne diseases.

Similar Posts

  • Pick a little, talk a little–How to make a speech for IDSA Lyme review panel

    Well, as you can see, I’ve reached the cutting and pasting portion of writing my speech for the IDSA Lyme Guidelines Review Panel—a bit like making a quilt. You start off with yards of different fabrics, cut them into little squares and eventually reassemble them into the quilt, tying off the edges carefully and trying not to prick yourself with the needle on the way. As a patient advocate, I am allotted 15 minutes to make my point and leave the podium. By the way, it is a lot more difficult to write a 15 minute speech than a 45 minutes speech—size matters. It’s like Mark Twain said: “I didn't have time to write a short letter, so I wrote a long one instead.”

  • LYMEPOLICYWONK: AIDS Advocacy–A Model for Change

    This is a terrific resource that explains what made the AIDS patient advocacy movement successful. It's is available for free. Here's an excerpt: "Change is possible. But in order to
    create change, the focused voices of advocates must be heard through the din. Individuals and organizations must do the hard work of becoming ready to question the status quo, and be smart enough to present well-founded alternatives. Strong leaders in government must pave the path and prepare to stay the course. Specific strategies with clear goals must be established in order to hold people accountable."

  • LYMEPOLICYWONK: Study Finds Coinfections in Lyme Disease Common

    The largest survey of chronic Lyme disease patients was recently published in PeerJ. LymeDisease.org conducts these large-scale surveys to collect information directly from Lyme patients. Although the incidence of coinfections in chronic Lyme disease is unknown, many people assume that co-infections are rare in Lyme patients. The fact is no one has asked the question. So we asked over 3,000 chronic Lyme patients whether they had coinfections that were confirmed by laboratory tests.

  • LYMEPOLICYWONK: IDSA Dissing Lyme Advocates in the Lancet

    A recent article in Lancet written primarily by authors of the IDSA Lyme guidelines aims ”to blow apart the world of the Lyme disease advocates”–a goal that sounds more appropriate to warfare than medical journalism. Most of the authors of the article were under investigation by the Connecticut Attorney General for violation of antitrust laws in connection with the development process for the IDSA Lyme guidelines. The opinion piece is included in Lancet’s “personal view” section and reads like a personal vendetta from those named in the antitrust investigation, referring to patient advocacy groups as “antiscience” and making ad hominem attacks on physicians who treat chronic Lyme disease.

  • LYMEPOLICYWONK: Lyme Patients and Insurance Appeals

    Lyme disease patients have trouble with insurance coverage. They have trouble getting health insurance if they have ever had Lyme disease, on the one hand. On the other hand, they have trouble getting the disease treated because insurers rely on the IDSA guidelines to take a "free pass" on treatment reimbursements. This is an area that is clearly governed by something other than providing quality health care to patients. Have you ever wondered what happens–really happens–when Lyme patient appeal an insurance denial? What happens is we succeed 9% of the time, while other diseases succeed 40% of the time. What is going on here? How can that be?

  • LYMEPOLICYWONK: Is The IOM Workshop Really an IDSA Workshop in Disguise?

    I have gotten some thoughtful comments on my blog posts about the Institute of Medicine’s upcoming Lyme “state of the science” workshop. I want to share my thoughts about why CALDA pulled out of the process and why we will stay out unless there is dramatic change in the program. Whether it is best for groups to participate in a process even though it is biased is always a judgment call that depends on how biased the process is—in short whether you do more harm than good by staying in. CALDA pulled out because we represent Lyme patients and do not believe that we should legitimize a highly biased process by participating in it. We do not believe this is in the best interests of patients. Let me break this down a bit in terms of what is happening at the IOM workshop to explain why I believe it is highly biased.