Credible Science – How Can We Help Patients Find Good Information?

All the views and opinions expressed here are mine and may not reflect the views and opinions of my employer or clients.

I don’t know about you, but this new year took off running right out of the gate.  January flew by in a blur.  I was so busy starting my new job, surviving Snowpocalypse 2020, and driving my teen to her new job (she’s a lifeguard!) that I didn’t have much time to sit down and just think. So, I was relieved this week when I was able to attend Academy Health’s Health Datapalooza (HDP) and National Health Policy Conference. It was a nice opportunity to just be present and listen. So many great topics were covered at the conference; I will need time to digest and synthesize them all.  But one stood out to me and since I have a few minutes to stop and think and write, I thought I would share it with you.

Many of you have probably heard the story of David Fajgenbaum who, after being diagnosed with Castleman’s Disease as a medical student, found a treatment that worked. (If you haven’t, I highly recommend taking a few minutes to do so).  Dr. Fajgenbaum was part of a panel at HDP discussing crowd-sourcing cures for disease.  It was a fascinating discussion that led me to wonder:  How can we help the lay person know what good medical information looks like? There is a lot to unpack here. Why are patients not getting the medical information they need from their doctors? Why are Facebook groups considered more credible than scientific publications?  How can we get patients to trust science again?  How do we share patient success stories when the disease is too rare to have an evidence base? All these questions circled my brain as the discussion continued.

One story that stuck with me from this discussion was from an attendee who shared that she too had found a treatment for her rare disease on her own.  Wanting to share her story and her success, she wrote a white paper chronicling her experience and submitted it to a credible disease advocacy group. But the advocacy group wouldn’t publish her story. Why? Because there was no clinical evidence base for how the treatment she found effectively and safely treated her condition.  Eventually, after making changes to how she presented her experience, she was able to share her story.  Following publication of her story, she began receiving multiple requests from other patients for more details about how she succeeded in treating her disease. Rather than have the information come from a credible source (i.e. the advocacy group), patients were forced to use word of mouth to share this valuable information.  There must be a better way to both recognize the anecdotal experience of a specific patient while providing critical information to patients by means of credible sources.  

It is stories like the one I described that make me wonder if the scientific and medical community aren’t driving patients away from credible sources of information.  Instead, patients seek information wherever they can find it including information that sounds legitimate but is not based on good science or anyone’s actual clinical experience.  If doctors won’t or don’t have time to take patients seriously when patients share their idea of what might be wrong or what might work to fix the problem, then patients have no other choice than to seek that information elsewhere.  Sadly, what they find from Dr. Google or Dr. Facebook Group will likely not help them, and in some cases cause serious harm (see this story about a child that died from the flu after the mother failed to fill a Tamiflu prescription and instead sought advice on a Facebook forum). In the case of the child that died from the flu, the mother clearly thought she should see a doctor, but what kept her from trusting the scientific basis of the prescription the doctor gave her for her son? If we can’t address this growing distrust of science, it will be even more difficult to convince patients that some information is more credible than others.

As I was waiting for my flight to board back to Seattle, I found myself sitting next to a lady whose doctoral work is focused on science education. Coincidence? I think not. We discussed in depth this issue of distrust in science and the need for patients to have credible sources of information. We need to get patients and doctors talking to each other and really listening. And the medical community needs to do a better job of providing opportunities for patients to share their stories while preserving the credibility we so desperately need. No one should live with or die from a treatable illness because of a fundamental distrust of science and the medical community.