Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable

By Dana Deighton

In the fable of the Ugly Duckling, the duckling feels isolated by his differences until he discovers that he is a swan too. Patients with undiagnosed conditions also feel isolated, with some even describing not being believed by their doctors or even their friends or families. One member with scleroderma shared her story:

I spent 27 years seeking help — every type of specialist, tests, hospitalizations, medications of every type, anything to put a name to my misery, not being treated like an attention-seeking patient. –Inspire member

The Ugly Duckling’s experience of his life changes when he finds his own community.  Similarly, patients find more than simple relief from isolation in social media health communities. According to Inspire’s analysis detailed in the case study, Real World Voice Insights: Communicating about Rare Disease, “Patients and caregivers rely on online discussions of successful treatments and of others’ journeys for their treatment information.”

Often, patients want to know how their experience compares with peers who are at different stages of the same patient journey.  They want to know where they fit in, often sharing specific details of their test results and medication doses.

For example, in a post titled “Need Some Input on What to Expect,” a member wrote:

I was recently diagnosed with non-small cell lung cancer. I had a pet scan yesterday which revealed it has possibly spread into some of the ribs and also a few lymph nodes. Does anyone out here have any similar experience with anything like this. It is all new to me and newly diagnosed as of about a week ago. I see the Dr. on Thursday for a plan of care. –Inspire member

In addition, in the same case study, Inspire’s research found that “Patients post about their conditions when they have immediate needs.” One patient described how his patient journey changed when he discovered Inspire, and how he also found relief for a side effect of his treatment — itchy skin.

Since discovering this site, I have become much more active in exploring my cancer and it’s side effects… Thanks to a number of members I was able to source [OTC product] which is not as readily available here in Australia as in the States. It’s been just wonderful in soothing my feet and for treating the area around my nose and nasal passages for dryness and sores. – Inspire Member

Social media health communities improve the likelihood of patients finding peers who have information that can change the trajectory of a patient’s disease. Inspire research shows that the point in a patient’s journey when they get the diagnosis absolutely impacts the life experience of patients:

[For some diseases][t]hose who are not diagnosed early experience permanent disabilities. When diagnosed early, patients have successful treatment outcomes, especially if they are compliant with medications and engage in prescribed therapies. …Those who were not diagnosed as early communicated frustration at their inability to do the day-to-day activities they used to do because of physical or neurological disabilities.

For example, in the Spinal CSF Support Group, one member learned the name of a a recommended specialist in their condition that was even located in her area:

You have no idea how much the responses, info and caring mean to me… I am calling today to see when I can be scheduled with the neurologist. It is the first Monday in a long time where I am starting the week with hope. — Inspire member

It’s encouraging that patients are empowering themselves by going to health communities to actively research their conditions and find answers from peers. But what if we could identify and target people with the right information faster?

The next generation of online health communities will enable patients to opt-in to receiving direct information thanks to advances in artificial intelligence, machine learning, and targeted messaging, (For more information, see the post “ Next Generation Online Health Communities.”).

Online health communities are about much more than the relief patients and caregivers receive when finding their peers. Patient journeys are impacted by the availability of information, and the timing of that information is crucial to effective treatment. The impact of connecting with others can even be more profound for patients and caregivers affected by rare conditions where less is known, less is published, etc. Patients and their caregivers may discover points of intersection or even anomalies that are actionable, and at the very least drive a more meaningful dialogue with providers. An aggregated community has the power to expose what otherwise may not surface in the clinic or even around the dinner table. This connectivity counterbalances the isolation.

Next Generation of Health Communities will do this better and faster. The Ugly Duckling might find out he’s a swan without months-long Google searches. And that swan will have targeted treatment information.

Join us for a live virtual roundtable of patient advocates on Thursday, September 17 at 2 pm ET. Sign up even if you are unable to attend to receive the video of the event.