The best medicine in the world won’t work if you don't take it. Would patients with depression be more likely to follow their treatment plans if they had more input into clinical decisions?

Depression rates are high among Native Americans in South Central Alaska—20 percent of women and 13 percent of men, in one recent survey.[1] Contributing factors include economic hardship and the limited daylight during many months of the year, says Renee Robinson, RPH, MPH, PharmD, of the Southcentral Foundation, a tribally owned nonprofit healthcare system headquartered in Anchorage. But despite the foundation’s vigorous screening efforts and integrated program of behavioral health services, depression treatment wasn't working well. The staff felt that they were missing something.

Toward a Depression Dialogue

"We found that a lot of prescriptions for antidepressants weren’t being filled, or refilled," says Robinson. "When we talked to customer-owners [a term that the Southcentral Foundation prefers to patients or consumers], we realized that many didn’t know that antidepressant drugs take a while to work—people thought they acted quickly, like antibiotics—and that depression treatments besides medication are available."

Misunderstandings about depression treatment can go uncorrected because customer-owners’ discussions with providers "have been pretty one-sided," Robinson says. "Ours is a non-confrontational community. If there are disagreements, they aren't necessarily voiced.

Robinson had previously worked on methods to facilitate customer-owner involvement in treatment decisions. She wondered whether Southcentral Foundation’s customer-owners with depression would be more likely to follow through with their therapies if they had been more actively involved in treatment decisions—through more easily available information, better communication with healthcare professionals, and more consideration of their perspectives.

With PCORI funding, Robinson is leading a team developing a tool to help customer-owners do just that.

"We want to give customer-owners enough information to feel comfortable having a conversation with providers that would lead to a treatment that would work for them,” she says.

The Patient’s Perspective

Sonda Tetpon, a lifelong recipient of care at the Alaska Native Medical Center and now the manager of a primary care clinic there, says, "I've struggled with depression most of my life." She is a member of the Decision-Support Steering Committee—made up of 12 customer-owners, healthcare providers, clinic managers, and tribal leaders—that is guiding the PCORI-funded project. "One thing I thought essential to include in the project was the importance of constant upkeep,” she says. “People have to know what to expect."

Tetpon says in her own experience she gradually learned that "mental health is no easy fix.”

She notes, “At one point, in my early twenties, I was exercising regularly, eating well, taking medication consistently, but still having a hard time. You have to expect that change occurs slowly. If you feel a little down, that's okay; but if you don't keep up meds and exercise, it could change to being really depressed. This may be a lifelong struggle, but if you stop, it gets worse.”

One thing I thought essential to include in the project was the importance of constant upkeep ... People have to know what to expect.

Sonda Tetpon Patient Partner, Customer-Owner

The research team and steering committee consulted with US and Canadian experts in patient decision aids and links between tribal culture and mental health. But other experts were closer to home.

Researchers interviewed Southcentral Foundation customer-owners extensively about their experience with depression and its treatment: What happened at the clinic? How did you feel when told your diagnosis?  What information were you given? Would you have liked more? How would you have wanted it presented? Members of the project steering committee and Southcentral Foundation care providers and leaders also shared their experiences.

"We wanted to find out what had worked in the past, what hadn't," Robinson says.

From Pilot to Finished Product

The researchers have now drafted the text for an iPad app informing customer-owners about depression—its causes and contributing factors and the pros and cons of treatments, including medication, counseling, and holistic approaches. The text is augmented with illustrations that include Alaska Native/American Indian faces, images from Alaska Native/American Indian culture, and quotes from the research participants and steering committee members about their experiences. In the final version, the researchers plan to add links to instructional videos.

“One thing I learned from customer-owners is that simpler and less is more,” Robinson says.  “You don’t have to discuss every aspect of every medication right away—but we should provide a way for the user to delve further.”

The user of the iPad app will first explore it with a provider and then visit an expanded website version at home for discussion with family members. For individuals without electronic devices of their own, there will be computers available in the clinic, and behavioral health professionals will be available to walk them through the material.

Once the decision-support tool is operational, it will be tested in three Southcentral Foundation primary care clinics serving approximately 15,000 people. The researchers will compare measurements of depression treatment adherence, outcome, and health-related costs at those clinics to those at three nonparticipating clinics after three months, six months, and perhaps a year. If the app proves valuable, Robinson says, the team will make it available throughout the Southcentral Foundation system.

Tetpon is enthusiastic about the prospect, which would, she believes, bring “true customer-owner-driven care” to depression management. She says, “I like the way the tool lays out all the things you can try. It doesn’t direct everyone right to meds or diet but presents the options so they can go down whatever path they choose.”

Posted: February 18, 2014; Updated: March 25, 2014

[1] Dillard DA, Smith JJ, Ferucci ED, Lanier AP. Depression prevalence and associated factors among Alaska Native people: the Alaska education and research toward health (EARTH) study. J Affect Disord 2012 Feb;136(3):1088-97.


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