By Emily Cepla, NAMI Program Manager, Child and Adolescent Action Center
Every fourth Friday of the month the doctor is in to answer your questions. In an hour-long “Ask the Doctor” call, NAMI’s medical director Dr. Ken Duckworth hosts doctors from around the country, along with members of the NAMI community, family members, mental health professionals and other individuals with an interest in mental health. These calls have the feel of an open office, where all can come and learn about mental health research and treatment specific to either children or adults living with mental illness.
Last week we were joined by Dr. Andrew Nierenberg from Massachusetts General Hospital, who discussed achieving and maintaining wellness with bipolar disorder. Nierenberg stressed that wellness is not defined simply as an absence of illness, but rather as a combination of many factors. He pointed to the research of Dr. Carol Ryff, who described wellness as a blending of the following features: self-acceptance, environmental mastery, positive relations, having a purpose in life, personal growth and autonomy. Dr. Nierenberg’s interest in promoting wellness among individuals living with bipolar disorder led him to work with the Patient Centered Outcomes Research Institute (PCORI).
Nierenberg describes PCORI as a “network of networks,” connecting families, patients, researchers, insurance companies and clinicians in an effort to give patients the information they need to make decisions about their desired health outcomes. Nierenberg, with the help of Duckworth, NAMI, the Depression and Bipolar Support Alliance, International Bipolar Foundation and other research institutes has been awarded funding to create a Mood Patient-Powered Research Network (Mood PPRN).
The goal of the Mood PPRN is to gather 50,000 patients with mood disorders to participate in effectiveness studies and provide data through electronic medical records and patient-reported measures. This information will aid the Mood PPRN in their ultimate goal: improving the lives of individuals with mood disorders. The data collected will help clinicians determine the appropriate treatment for their patients, while providing patients with more information about what treatments have been effective for other individuals with similar symptoms.
Additionally, researchers will be able to use this information to further understand the biology of mood disorders, and can use it for personalized care.
For more information on PCORI and the Mood PPRN, visit http://www.pcori.org/. Updates on how to get involved in the study will be posted as they become available.
For a schedule of future Ask the Doctor calls and to listen to this call or other past calls, visit www.nami.org/askthedoctor.
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