Moody Monday: Feedback

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.

Moody Monday

I’m reclassifying The Mood Network from “resource” to “opportunity for activism.” It’s a huge research project dedicated to developing better treatments for mood disorders based on the lived experiences of people who have them and our families. However, so far it looks more like a teaching model – “we’ll tell you” instead of “please tell us” – and the forums are practically dead. If this thing is going to work, it needs a lot of love.

Part of the "Participant Portal" page that becomes visible after signing in. Options include surveys to determine if you've ever had depression or mania, "ask the doctor," and discussion forums. Not visible: You can also read and comment on their blog.

Part of the “Participant Portal” page that becomes visible after signing in. Options include surveys to determine if you’ve ever had depression or mania, “ask the doctor,” and discussion forums. Not visible: You can also read and comment on their blog.

The Participant Portal, screenshot above, seems okay overall. I like the invitation to share our experiences. The forums and blog are the only places to do so, though. The surveys are similar to others you can find online, particularly at the Depression and Bipolar Support Alliance (one of the groups involved in this project.) I’m not sure if the “Ask the Doctor” option is unique among otherwise-available resources… But again it’s “ask the doctor” not “tell the doctor.”

I’ve been focusing on the forums the most and frankly, they are disheartening. A few people have gotten into discussing “Treatments,” but the “General Questions” forums are empty. I think the problem is that they create two mutually-exclusive categories that are ridiculously broad, unfocused, and don’t invite discussion of topics (or diagnoses) that may not fit neatly in either category. There is no way for participants to create new categories.

A screenshot of the "Forums" page. There are three categories: "Treatments," "General Questions about Depression," and "General Questions about Bipolar Disorder." Only the first category, "Treatments" has posts.

A screenshot of the “Forums” page. There are three categories: “Treatments,” “General Questions about Depression,” and “General Questions about Bipolar Disorder.” Only the first category, “Treatments” has posts.

I don’t know about other research participants, but I’m not there to ask questions; I’m there to share my experiences. Where is the space for us to share our stories? To discuss how mood disorders – and the associated stigma – impact our lives? To give feedback on our ability to access care and how health professionals treat us? Where is the space for our family members to discuss their experiences of living with and supporting us? What about those of us whose mental health issues don’t fit neatly into “Depression” or “Bipolar Disorder?”

One thing I’ve learned about research is that it’s important to come up with specific questions you want to answer via your research methodology. These researchers have created a space where they can ask us questions directly. They should use it! I can’t know what their questions are, but I can make some suggestions: “What makes a good therapist?” “What treatments have and haven’t worked for you?” “What barriers have you faced to accessing treatment?” “What can health professionals do to better meet your needs?” “What research do you think we should be doing?” Etc.

The words "Keep calm and formulate your research question" in gold against a red background

“Keep calm and formulate your research question” retrieved from the JEPS Bulletin.

Also, I’m annoyed that I had to choose “Male” or “Female” to register for the study. Gender (and physical sex) are so much more varied and complex than that! Trans* people face additional discrimination and erasure that definitely impact our mental health; those of us who are non-binary, fluid, agender, very proud of being trans*, etc. definitely don’t need more of that. Also, trans* people who transition medically may be taking hormones or have other unique medical needs that impact their response to medication and/or other treatments. These are all very important considerations for any health-related study.

Actually, that would be another great research question: “In what ways do systems of privilege and oppression (e.g. racism, sexism, cis- and/or heterosexism, wealth inequality, ableism, etc.) contribute to your mood disorder / symptoms?” I also like, “What community initiatives might help lower the incidence of mood disorders and/or make living with them easier?” Focusing on the medical aspect, “Do you have any medical condition(s) that have influenced the benefit you receive from treatment?” (I could probably do this all day.)

a masculine queer person, frowning and with arms crossed, is excluded from a conversation by other queer people taking place on the other side of a closed door

illustration by Jessica Krcmarik

Anyways, activism. I invite anyone who’s interested to join The Mood Network and light a fire under the researchers’ butts. Contact them directly with whatever feedback you deem appropriate, comment on their blog posts, start new discussions in the forums, send them links to mental health blogs. Spread the word. This is intended to help us, let’s make it our own!