is the Chief Executive Officer of LymeDisease.org. She is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 40 peer-reviewed articles on this topic. She co-authored the Lyme disease guidelines of the International Lyme and Associated Diseases Society, published in 2014. She serves as a patient representative of the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI) and sits on both the Executive and Steering committees of PCORnet, a national patient-centered big-data project. She chairs PCORnet’s Patient Council. In addition, she is co-chair of the steering committee of Consumers United for Evidence-Based Healthcare, a nationwide coalition of consumer groups associated with the international Cochrane Collaboration and serves as a consumer peer reviewer for Cochrane evidence-based protocols and reviews. She has spoken before state legislatures, US and international governmental agencies, and at healthcare policy conferences throughout the world. Her blog focuses on medico-legal ethics and healthcare policy issues related to Lyme disease.
Everyone is entitled to their own opinion. So why do we care about bias in medical guidelines? Because opinion should not dictate patient care. Think of the prostate cancer patient who sees the surgeon who recommends surgery, the radiologist who recommends radiation treatment,... Read More »
For those who haven’t read, the recent New York Times article, "Plenty of Guidelines, but Where's the Evidence?" by D. Sanghavi, M.D., I suggest you check it out. Sanghavi discusses the problems caused by centralized guidelines in medicine particularly when... Read More »
Conflicts of interest are not good for medicine. Why? Because when a physician has a conflict a secondary considerations (such as a lab referrals, vaccine research grants, or revenues from proprietary diagnostic tests) may compete and trump concerns about the best care for the... Read More »
In May 2008, after an extensive investigation, the Attorney General announced a settlement of the antitrust investigation into the IDSA guidelines development process. The settlement requires that the IDSA put together a new panel free from conflicts of interest, permit the... Read More »
The IDSA is now accepting applications from clinicians and scientists for a seat on its new Lyme disease guidelines review panel, which will consist of 8-12 members (including the chair) “who, as a group, reflect a balanced variety of perspectives and experience across a broad... Read More »
On May 1, 2008, the Connecticut Attorney General announced a landmark settlement against the Infectious Diseases Society of America in connection with its guidelines for treating Lyme disease. The IDSA guidelines are relied upon by insurers throughout the nation to deny... Read More »
In May 2008, the IDSA agreed to re-evaluate its guidelines as part of the settlement agreement for an antitrust investigation by the Attorney General of Connecticut, which found significant conflicts of interest on the original panel, suppression of scientific evidence, and... Read More »