The Mood Network is a research study that enables people with mood disorders and our family members to work with doctors and researchers to find better treatments – not only by providing data, but by sharing our insights. I first blogged about it 3 weeks ago, calling it an opportunity for activism, critiquing its implementation, and encouraging readers to “light a fire under the researchers’ butts.”
Well, some pretty awesome things have happened since then. I was contacted the next day by the head of the Mood Network: Dr. Andrew A. Nierenberg, MD. He thanked me for my feedback and assured me that he would bring my suggestions to the rest of the team. I’ll admit, I was a bit skeptical – but also pleased to have gotten his attention.
Then, on June 12th, Dr. Nierenberg commented on my first Moody Monday post:
Thanks so much for your interest and thoughtful comments about MoodNetwork.org. We are taking all of your feedback seriously and are in the process of implementing some of your suggestions. MoodNetwork will include surveys to do exactly what you suggest, i.e. to find out what is important to experts by experience. We will also have opportunities soon to not only to ask you and others about research priorities, but also will ask you about your experience in receiving care. We are also working on improving the forums and blogs – and yes, it does need a lot of love. Please be patient with us and thanks for joining.
It means a lot to me that the head of the Mood Network made a statement like that on a public site; it suggests to me that he and his team are serious about making those changes. I especially appreciate the specificity regarding which suggestions they intend to implement. (The new surveys and opportunities haven’t appeared yet.)
[Edit: there is a survey asking “what should we research?” The link to it appears in the menu on the mobile site, and in the left sidebar on the regular site.]
People have become a lot more active on the forums in the past few weeks. I’m enjoying the honest discussion, opportunities to see that others share some of my experiences and perspective (universality), and the feedback participants are providing about the site. If you are one of the active participants, thank you! (If you’ve joined or are considering joining, thank you!)
Most recently, two new categories have appeared on the forums: “Symptoms” and “Exercise.” I’m pleased to have more options, and very curious to see what people do with them.