We need to get more depression researchers and depressed people into a healthy relationship. People with depression help move research forward.

It’s not easy for a depressed person to function some days, much less be involved in research. But you might be surprised how many depressed people actually want to create change and are ready and willing to work with researchers.

Depression research

I’ve worked with Canadian mental health researchers to improve the outcomes of people suffering from depression. The researchers I know are dedicated and highly motivated. They want to make changes to the way depression research is done so that depressed people have an equal voice. These researchers understand that depressed people want to get better, that we are looking for alternative therapies, and we want to be respected and not face stigma.

Giving back the depressed person’s voice.

One of biggest things that depression does is stifle a person’s voice. It’s tough to talk about depression. When it comes to depression research, especially the way its done via the old system, the depressed person’s voice can be non-existent.

The irony in depression research is, that while the research is about helping depressed people, often there isn’t any outlet for depressed people to be active collaborators in the project. Depressed people aren’t always consulted by clinicians and researchers. Concerns and ideas aren’t heard. When depressed people are consulted, they don’t have any positions of authority in the project.

When you are depressed, its hard to advocate for your health and wellbeing. Doctors may not believe you. Clinicians may think they have the best answers. Researchers may only want answers to questions they have. It seems like no one in the system is listening to you. No one wants to hear your ideas on how to make the system work better for someone depressed. Nor does anyone want to listen to ideas you have about what might make you feel better, or what really does make you feel better. Things like alternative therapies, herbal supplements, yoga, spiritual guidance.

Researchers come up with questions of interest to them.

Researchers tend to be isolated. They come up with research questions that they are interested in, or know will get funding. The last group a researcher may ask for input is people with depression. So ideas on how to treat depression, or where research should be focused, may not have room in the current research project. Most depression research uses pharma products and cognitive therapy. What about the lethargy, or the physical pain that comes with depression? Could some alternative treatment help? Does climate or location affect depression?

Then there’s the way researchers are trained. In the old method, a researcher spends years learning and doing research. There’s lots of “hammering down the nail that’s different” when it comes to presenting new ideas to fellow professionals. You do things the way it’s always been done, because it’s the proven way to get funding and be published.

Even if you are enthusiastic and want to revolutionize depression research, there is so much pushback from people higher up in the department that you will feel like you’re hitting a brick wall. Fortunately, times are changing and new researchers are being taught to use people with lived experience as partners in research. These partnerships are proving valuable as they give new insights into depression and encourage ground breaking strategies.

Big money speaks.

Funding gets projects off the ground. If a group of depressed people want research on some herbal remedy, a researcher usually insists the group comes up with the money before even considering the project. And we’re talking BIG money. Most of that money is spent on the research, not on compensating people with lived experience involved in the project.

When researchers get money, they like to be in control of how its spent. They would rather have volunteers than have a paid position. Sure, there is a trend developing to pay for travel, meals, and hotels for people with lived experience. But we’re talking pennies per mileage, exact costs, and always having to prove your expenses with receipts. It’s doesn’t quite give value for the person’s time and experience. If you take time off work to help out with research or to speak at a conference, you want to be shown that your time is valued.

People with lived experience need to be compensated more than pennies and dollars at a time. There needs to be a salary, paid flat fee, or some bursary. The money should be a true reflection of the person’s value. Some have suggested giving a few hundred dollars every time the person meets with the research group. But this has serious pushback from researchers. Why? Because that money could be spent buying publication space in magazines.

Researchers spend thousands of dollars on publications.

It’s amazing how much money a researcher needs to get published. In research, you don’t get noticed or get grants awarded unless you publish. Lots! Science magazines know this. They have a pretty good gig going too. Magazines charge thousands of dollars for publishing an article. The researcher knows this, so the researcher will ask for and get millions of dollars in grant money. The magazine won’t even look at a research article unless money is first received. And then it will take months for anyone to look at the article, and a few more months before its published.

You can understand why researchers don’t share lots of information between each other. And why there’s that “publish or perish” attitude ingrained in their culture.

Research needs the voice of the depressed.

When depressed people have a chance to share what works and what doesn’t, and how they can be in control of their lives once again, depression research really moves forward. Young researchers are reaching out to depressed people to form equal partnerships in the hope of new breakthroughs.

Let’s help depressed people and researchers get into a healthy relationship. Contact your local university or college, and find out what type of depression research is going on. Be an advocate for paying people with lived experience. Be active on a research board. There are a lot of ways you can help improve the relationship.

Need help? In the U.S., call 1-800-273-8255 for the National Suicide Prevention Lifeline.

Twitter  @tereziafarkas

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