[This blog was originally published on The Itch to Beat Psoriasis.]

I recently spoke with Dave Taylor, director of research at Inspire, a patient engagement company with about 220 disease condition sites. If a picture is worth a thousand words, then Inspire’s communities paint thousands of pictures of people living with a myriad of health conditions, including psoriasis.

The TalkPsoriasis community, in partnership with the National Psoriasis Foundation (NPF), now has over 100,000 members, and is the largest that Inspire hosts.

“These are people who took that first step and turned to the Internet,” Taylor says. “We have a billion words” from members who engage others about their health conditions on the site.

Patient Insights

Last year, I wrote about Inspire’s first annual survey titled “Insights from Engaged Patients.” I excitedly opened this year’s survey to find out what, if anything, changed.

Originally, I wrote about how to become a more engaged patient: advocate for yourself, break down barriers to care, and use electronic resources.

These three still stand out for me after reading the latest report. As an engaged patient, you need to advocate for yourself and break down barriers more than ever before. For example, engaged patients experienced cost issues 65 percent of the time with treatments, 52 percent with other medications related to treatment, and 40 percent from out-of-pocket costs related to travel and logistics.

Cost barriers continue to hit me in the wallet each time a family member picks up medication at the pharmacy or sees the doctor. The co-pays go up each year, while the benefits stay the same or decrease. It’s challenging to stay on top of your own healthcare — to overcome the countless hurdles like costs, insurance, and access. But that’s what engaged patients who live with serious health conditions need to do more than ever.

As for using electronic resources, this year’s survey showed that patients increasingly engage with their healthcare on mobile devices. As Taylor notes, “the number of people who used their smartphone to look for information about their health conditions went from 28 percent to 50 percent this year.”

While I am never far from my smartphone, I don’t use it as much for healthcare as I do for email and messages, checking the weather, or sports scores. In my experience, mobile delivery of health information has come a long way, but still needs improvement.

Taking Medications as Directed

As an autoimmune patient, I scanned the report to see if any data stood out for my group. I learned that “autoimmune and neurologic patients are more likely to have gone without medications (60 percent of patients of each type).” As Taylor says, “You are dealing with chronic, ongoing treatment. The fact that you have to take a medication indefinitely opens the door to adherence and compliance issues.”

Taylor also notes that people with more acute conditions might prioritize those over chronic conditions. I couldn’t agree more. Keeping up with medications is a concern that I’m focused on this year. The report cites side effects (53 percent), cost (53 percent), insurance coverage issues (40 percent), lack of effectiveness (33 percent), and dosing issues (8 percent) as reasons that patients stop taking prescription medications.

These issues are difficult to overcome and need to be addressed in proactive ways. Of course, talking to your doctor about adjusting medication is key. But I get embarrassed to tell him if I’m not following his directions, and I might not want to try the alternative.

Brand Name or Generic Equivalent?

A final observation from the report speaks to brand name and generic equivalent medications: “Oncology patients and autoimmune patients are more likely to not know if their medication has been switched to generic equivalent.”

Often taking a generic equivalent is not an issue. But studies show that the brand name sometimes does make a difference. That’s the case with one of my medications. My dermatologist often forgets to note “brand name only” on the prescription. I refuse the generic, and have the pharmacy call my doctor to approve the brand name.

Do you know if your medications need to be brand name, or if they are switched to generic when you go to the pharmacy? The engaged patient needs to ask that question, at the doctor’s office  and the pharmacy.

The report contains much more information about the engaged patient than I could highlight here. You can view all the survey results here.