Help Me Help You Help Me.

Last week, after recognizing an incredible lack of patient education upon epilepsy diagnosis, I resolved to do something about it. Knowing from experience that this sort of issue is best addressed by foundations already involved in the area of need (since they generally have education as a part of their mission, and they usually have some resources/connections already in place), I contacted our local branch of the Epilepsy Foundation. When I called and expressed my concerns, they seemed open and invited me in to discuss the issue.

I just got back from that meeting. I can't say I've ever had a meeting quite go the way that this one did. In retrospect, I actually think the meeting went backwards. Usually, as a designer, I'm in the position of being approached by the client, and then for the introductory meeting I am invited in to present my portfolio. I (try to) impress them with my work, they tell me about their organization and their communication needs, and I then tell them how we are going to best address them. Conversely, in this case, I was the one that called the organization (out of the blue) and I told them what their needs were. The person I spoke to on the phone seemed to agree with me about those needs; but today in a meeting with multiple individuals (some whose job is outreach and patient education) they were understandably less enthusiastic to hear that I felt they were doing a less than stellar job.

There were a lot of explanations, justifications, and attempts to show me that they had suitable patient education materials and were doing the best they possibly could to get them into the hands of the people that needed them. I was told that they weren't the problem (the doctors are), that they didn't need better materials (they had plenty), and that they also had many resources to provide (when people called them).

Some of what they said made sense (I completely get that neurologists can be a little tough to talk to... and it is notoriously hard to get and sustain the attention of busy medical professionals), but a lot didn't (yes they had lots of materials; but they weren't effective, and waiting for people to find them to call them to know ask for information is exactly the problem in the first place!). Fortunately (for my case), I'd taken my time and done my research on the areas of concern I was raising -- because I was well informed I wasn't easy to dismiss and our conversation became fairly in-depth.

Eventually, it was conceded that the only place they actually knew they had info for patients available was in an Epileptologist's office. Not in any neurologists offices, not in any pediatrician's offices, not in hospitals, or clinics, or any of the places where people are most often diagnosed with epilepsy. (By the time you are referred to see an Epileptologist you are already aware of what you need to be doing and are getting education). We could all agree that this was a problem. They are also not currently able to follow up to see if the doctors that they are trying to reach via email blasts are connecting their services to their patients, another significant problem.

Gradually, I was making my case and we were starting to be on the same page -- but they still didn't seem to be ready to do anything more about it. The consensus seemed to be that they were doing all they could already, and the real problem was outside of their control. Myself, I was getting frustrated and felt like I was talking in circles. I was worried I was getting nowhere fast.

Finally, I brought out some of the samples of my own work that I had with me. I'd brought them "just in case" I needed to explain something, and because, as a designer, I feel a little naked without my work with me. I hadn't planned to show it because I wasn't there to get them to hire me; and I was afraid that if I started off our meeting by showing them patient education projects I'd worked on that had been effective it would seem far too self-serving -- which was not what this meeting was about (at all).

Stupid me.

By the time I pulled out my work the table was already filled with examples of their current materials. As I laid my projects over top I was even surprised by how much my work stood out from theirs, begging to be picked up and read. As I laid it out I noticed their eyes growing wide. They immediately dove into the work. "Wow" I heard one person mutter under their breath.

At that moment, the entire tone of the meeting changed. No longer was I just another raving lunatic parent advocate, I was someone with skills that knew what she was talking about! Suddenly, they decided that their current brochure might actually be ready for a redesign.. would I be willing to talk to the advisory board to tell my story... they would love it if I would consider attending conferences, and maybe being on their board...?

O...M...G... I can't decide weather to laugh or cry right now, but at least I feel like I got somewhere (even if I don't know where that is yet). I have a feeling this is going to be a loooooong road but that's okay. Have portfolio, will travel.

One of their current brochures (left) vs. a Laura-designed patient education brochure (right). Which one would you rather read? I'm guessing it is NOT the one with the scary looking purple doctor... just sayin'