Through the Eyes of the Patient

mood network

Roberta Tovey
Director of Communications, MoodNetwork

The concept of patient-centered care is not, on the face of it, a very complicated one. Nor is it new: developed in the 1980s, and based on the famous psychiatrist Carl Rogers’ humanistic approach to psychotherapy in the 1950s and ’60s, it has been widely promulgated in modern healthcare theory and has been the credo of family practice medicine for decades. Nevertheless, patient-centered care has turned out to be harder to implement than to describe, and is still not incorporated into most medical practices. This is especially true of the area of mental health.

Patient-centered care is focused on the patients’ perspective and needs rather than on the particulars of a disease. A clinician treating a patient for kidney disease, for example, will focus on how a patient and his family experience his illness rather than on the level of protein in his urine or creatinine in his bloodstream. Patient-centered care also means that practitioners, patients, and their families are collaborators with shared responsibility for understanding problems, making decisions, and following through on treatments.

A good way of understanding the concept of patient-centered care is to look at what it isn’t: it isn’t paternalistic, top-down medicine where the doctor diagnoses and prescribes, and the patient follows orders. Rather, it is a more holistic model of medical care that is empathetic, engaged, and genuine, where the patient is an equal partner with the doctor or clinician.

Sadly, the patient-centered care model has made the fewest inroads in the treatment of mental illness. “The translation of theory into practice has been limited in mental health because there are fewer incentives to evaluate how patients experience their care. “The absence of data to help clinicians focus on aspects of care that need improvement is a real problem,” says Susan Edgman‐Levitan, PA, Executive Director of the John D. Stoeckle Center for Primary Care Innovation at Massachusetts General Hospital, who has worked to promote patient-centered care for over two decades. “What patients need is respect, dignity, emotional support, and evidence-based information to help them make treatment choices that fit their values and goals.”

Here’s a case in point from my own experience. Some years ago, I saw a doctor who wanted to prescribe a certain medication for my depression. Since I had had a long history of panic attacks and knew that a possible side effect of the medication was anxiety, I said that I didn’t want to try it. My doctor’s reaction was frustration and anger. He accused me of “not wanting to get better.” Needless to say, I never tried the medication and I never went back to that doctor.

Or take the notion of “non-compliance” (the very phrase suggests an authoritarian perspective). Non-compliance is one of the biggest problems in the treatment of mood disorders, from not taking medication or skipping therapy sessions. Yet evidence shows that when patients are part of the decision process, they are much more likely to follow through with their treatment.

If the patient-centered model is still not widely used in medical practice, it has been completely nonexistent in medical research. This is where a brand-new, online study about depression and bipolar disorder comes in. MoodNetwork solicits the opinions, ideas, and experiences of people with mood disorders specifically to learn about the patient’s perspective and use it to improve care, develop treatments, and inspire new research.

Funded by the Patient Centered-Outcomes Research Institute (PCORI), MoodNetwork is the only study of its kind that focuses on mental health. Participants in MoodNetwork not only contribute valuable data for research into new, individualized treatments for mood disorders, they also communicate with doctors, researchers, and each other in a community of learning by giving feedback on research topics, healthcare, treatments, and the network itself. MoodNetwork is also unique in the field of mental health in that it was created and is now managed by a cooperative effort of people with mood disorders, clinicians, and researchers.

By breaking down barriers to seeing patients as partners in research, MoodNetwork could lead to more acceptance of patients as partners in their own care. And the data the MoodNetwork collects to address and answer questions important to patients could lead to more effective individualized care.

“The PCORI model of involving patients in research is a dream come true,” says Edgman-Levitan. “For once, we may be able to get it right.”

Your Turn

  • What research topics would you like to see MoodNetwork address?
  • What keeps you from participating in mental health research?

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1 comments
Pete Nelson
Pete Nelson

I believe my psychiatrist llistens and responds to my experiences. I'm a partner in my care.