The role of patient advocates in Lyme disease policy should be limited
This past month, the Federal Framework on Lyme Disease Conference took place in Ottawa. The purpose of Framework is to establish a national surveillance program, best practice guidelines, and standard educational materials to increase Canadians’ awareness about Lyme disease. The Framework has the potential to create positive change for patients affected by Lyme disease and to help prevent others from enduring the physical, psychological and financial burdens imposed by the disease.
What concerns us, however, is that patient advocacy groups have been given a central role in deciding upon the framework and information that is not evidence-based can gain traction amongst advocacy groups. During the conference, more than 100 members of the public gave testimonials. In the closing session of the Conference, Jim Wilson, President of the Canadian Lyme Disease Foundation and a Conference co-chair, called for patients to be treated as equal partners in the development of Lyme disease policy.
We do not want to suggest that patients and patient advocacy groups don’t play a critical and important role. Indeed, they are arguably the main reason that the framework saw the light of Senate.
We think, however, that the influence of patient groups on scientific policy needs to be more clearly defined and curtailed. This is especially critical given the vast amount of misinformation and controversy surrounding Lyme disease. For example, in the case of Lyme disease, pressure from patient advocacy groups has led some American states to pass Lyme-disease specific legislation that, among other things, permits long-term antibiotic use. This has occurred despite a lack of credible evidence that long-term antibiotic courses are helpful, and even in the face of the recognized risks of resistance involved with unnecessary antibiotic treatment.
At the Conference, many policy recommendations made by participants relied on controversial and unproven claims. For example, in the education and awareness breakout sessions there was a call for increased public education about the sexual transmission of Lyme disease, despite no credible evidence nor a single case study demonstrating that Lyme is transmitted through sexual contact. Frequently, established science was questioned when it did not correspond with personal experiences. Indeed, numerous patients claimed that their experience living with Lyme disease made them the experts of Lyme disease, including in such matters as surveillance mechanisms and treatment decisions. While patient research can often be helpful to both patients and informative for health providers, it becomes problematic when there is a preponderance of non-scientific or non-peer reviewed information online. Furthermore, the general public is not as adept as experts at assessing risks of treatment or critically assessing scientific research.
The “patient experience = disease expertise” phenomenon is not limited to Lyme disease; unsubstantiated claims exist on the internet for just about any disease or condition. A similar scenario was encountered in Canada with Liberation Treatment, a controversial procedure meant to cure Multiple Sclerosis. Despite unreliable clinical trial results and high risks to patients, a significant policy response was triggered at the federal and provincial levels because of public outcry and political pressure, which was driven mainly by information and advocacy on the internet. This included the introduction of a federal bill to establish a national strategy for chronic Cerebrospinal Venous Insufficiency” (CCSVI), and some provinces earmarking over $14 million for CCSVI research.
The power of patient advocates to garner government actions despite a lack of credible research raises questions about the changing relationship between politics and science. Recognizing the increasing role the internet plays in this relationship, we need to define the role for patient advocacy groups in policy development, and create a strategy for responding to medical information spread online. To ignore this influence is to risk the legitimization of bad science, to treat pseudoscience and science alike.
Unfortunately, for Lyme disease, the path forward is not clear. There are still many unknowns about the disease, the way it functions and treatment options. The Federal Framework should focus on incentivizing research targeted at better understanding the disease, as well as educating medical professionals and Canadians about prevention and identification of Lyme disease. It is imperative to consider the burden that Lyme disease has, and will have, in relation to other public health threats in Canada when developing the Federal Framework, given the relatively small portion of the population affected by Lyme disease (less than 1%) and the increasing importance of antibiotic stewardship.
Most importantly, in order to protect the health of Canadians and the integrity of our policy-making process, it is important for the Federal Framework to prioritize adherence to evidence-based science and to ensure that any policies implemented are based on sound, peer-reviewed evidence. Patients should be consulted, as they play an important role in identifying the barriers to Lyme disease prevention and treatment, such as identifying the variability of knowledge among providers about this disease and the low level of awareness among the general public about symptoms and treatment. However, the voices of patients must not trump evidence-based science in the development of health policy.
It is now up to the Public Health Agency of Canada to determine what role patients will play in the formulation of the Federal Framework and to ensure the public is protected from the risks of unproven treatments and wrong diagnoses.
Melanie McPhail is a graduate of law at the Faculty of Law, Western University and is beginning a LLM (Master of Laws) at Western in the fall of 2016. Jacob Shelley is an Assistant Professor with the Faculty of Law & School of Health Studies at Western University, who specializes in public health law. Both attended the Federal Framework on Lyme Disease Conference in Ottawa.