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By Laurie Edwards, Next Avenue Contributor
When I received a diagnosis of primary ciliary dyskinesia, a rare genetic lung disease, 10 years ago, one of the first things I did was look it up on the internet. The disorder, known as PCD, is a rare or “orphan” disease, meaning it affects fewer than 200,000 patients in the United States. With only 400 appropriately identified PCD patients in the country, I certainly didn’t know anyone else with the condition. I was 23, I’d been seriously ill since birth, and I wanted to know what I could expect now that my symptoms finally had a label.
Enter the internet and its robust network of patient-to-patient groups. Within a few days of my diagnosis, I’d found listservs, Yahoo groups, a patient advocacy foundation and, later, Facebook groups for patients with my disease and related conditions. The majority of my basic medical knowledge about PCD came from my specialist and respiratory therapists. But I gained much of my insight into the emotional aspects of living with this incurable disease from the anecdotal experiences and shared wisdom of other patients, who answered such questions as: How long would it take my skin to adjust to daily chest physiotherapy, in which the lobes of the lungs are clapped vigorously to help break up secretions? How would this disease influence my mortality? Would I be able to have children? (After a long journey, I am now the parent of a healthy toddler, thanks in no small part to the support and advice of other PCD patients.)
Research from the Pew Internet and American Life project has found that 81 percent of healthy adults report going online regularly, compared with 62 percent of those living with at least one chronic condition. This disparity is attributed to lack of digital access, though, not a lack of interest. And once demographic variables are controlled, being chronically ill significantly increases the likelihood that a person will report working on a blog or contributing to an online discussion, listserv or other Web-based forum that helps people with personal or health problems.
In “Peer-to-Peer Healthcare,” another report from the Pew project, 1 in 4 patients living with high blood pressure, heart disease, diabetes, lung conditions, cancer and other chronic conditions reported turning to the Internet to connect with others who share the same diagnoses, illustrating the widespread desire we have to identify, learn from and support one another.
For the estimated 133 million Americans who live with at least one chronic condition, this shift to patient-centered networks represents a new, more empowering mode of communication, rather than the more narrow one-way dissemination of health facts from doctors alone. It was through a social media patient group that I was able to arrange an in-person meting with another PCD patient — it will likely be the one and only time I ever sit face-to-face with someone else who shares my diagnosis.
It was incredibly validating for me finally to have an accurate diagnosis of my condition and to have entry into a virtual community of people just like me. For millions of others who live with controversial, poorly understood or otherwise neglected disorders, particularly pain-related conditions like fibromyalgia, chronic fatigue and many autoimmune diseases, patient groups offer similar camaraderie and emotional support. Often, such patients feel disenfranchised from the medical establishment that is supposed to help them receive appropriate diagnoses and ongoing care. An “us versus them” mentality is, in many cases, inevitable.
In decades past, patients’ rights activism often included in-person protests and physical mobilization — the disability rights and women’s health movements of the 1960s and ’70s are compelling examples of this. Today, such advocacy groups have adapted particularly well to the virtual environment. These online platforms provide more than emotional comfort. They offer opportunities to get involved in clinical trials and disseminate (and sometimes finance) medical research. They can also be powerful advocates for new research, more effective treatment and improved social support systems for patients and families.
Again, for patients with more marginalized conditions — Lyme disease or chronic fatigue syndrome, for example — the sharing of information and virtual mobilization for research and acceptance is particularly significant. Illness can be incredibly isolating, especially for patients whose symptoms and diagnoses are routinely dismissed by the medical establishment. For these people, patient-to-patient networks don’t simply supplement more traditional support — often, they are the only sources of it.
Yet for all their benefits, virtual patient groups and networks also present challenges. Individual experiences that may be extreme examples of disease symptoms or trajectory may get amplified in an online echo chamber, and potentially misleading or confusing information may be repeated as if it is the norm. Alternative interventions may be perceived as accepted medical treatments, leading patients to adopt approaches that might not be fully vetted for safety or appropriate for all patients. Advocates who may lack the health literacy or research experience to interpret data might unwittingly misconstrue published results.
The exchange of ideas and experiences online occurs in real time. For better and worse, this immediacy stands in stark contrast to the much slower pace of academic research from publication to clinical practice. Patients need to be discerning readers of online information. The more material that is out there, the greater the responsibility on all parties to be transparent, reliable and credible. Patients need to be aware of who finances the research and information they come across and any potential conflicts of interest that may be at play.
The exchange of ideas and experiences online occurs in real time. For better and worse, this immediacy stands in stark contrast to the much slower pace of academic research from publication to clinical practice. Patients need to be discerning readers of online information. The more material that is out there, the greater the responsibility on all parties to be transparent, reliable and credible. Patients need to be aware of who finances the research and information they come across and any potential conflicts of interest that may be at play.
The ultimate goal is a collaboration between patients and health-care providers that delivers improved methods of diagnosis and treatment. When patient groups enable us to be informed participants in our own care and to drive such progress, everyone wins.
Laurie Edwards is the author of two books on chronic disease, including the recent In the Kingdom of the Sick: A Social History of Chronic Illness in America. She teaches writing for the health sciences at Northeastern University in Boston.
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