Personal medicine, power statements and other disruptive innovations
When I was 17
years old I had my first episode of psychosis, was hospitalized and diagnosed
with schizophrenia. I was told I would always be sick. My treatment
team advised me to take high dose antipsychotic medications for the rest
of my life and to avoid stress. The treatment and the prognosis of doom
surrounding my diagnosis were as disabling as the illness.
In time, I made my recovery, received a doctorate in clinical psychology, published and lectured around the world about recovery, and founded a health technology company run by and for people in recovery from psychiatric disorders.
My company, Pat Deegan PhD & Associates, LLC (PDA) has created technologies that support individual recovery and help practitioners work in ways that support recovery. Our web application won the American Psychiatric Association's Gold Achievement Award in 2013. It is being used in over 60 mental health centers across the U.S., with about 30,000 users at this time.
I wish to thank the reviewers for their comments and to assure them my presentation will not be a publicity statement. Toward that end I removed all references to the name of my web applications. My presentation will be an effort to share my lived experience of recovery and the lessons I have learned on that journey including:
- There is hope for recovery from major mental disorders. This hope can be conveyed through 3 min videos of first person accounts and the presence of paid peer workers in psychiatric medication clinics and mobile treatment teams.
- Recovery means finding the right balance between what we do and the medicines we take. The master narrative of PHARMA is inaccurate. Swallowing medicine is not enough. Recovery means changing our lives, not just our biochemistry. We must help people discover what they can do as well as what they can take to recover. I call this Personal Medicine.
- Compliance is a figment of the medical imagination. Adults make complex decisions about the risks, benefits, priorities and trade-offs of treatment. Through the use of Power Statements and shared decision making, it is possible to convey the treatment outcomes that matter to us. We are more likely to follow through when treatment helps us achieve functional recovery outcomes that matter: school, work, family, community.
- Too often having a diagnosis means our opinion and perspectives can be ignored. Technology can help overcome that bias. It can amplify our voice and bring our concerns to the center of the care team.
- Health technology can be assistive technology for those of us with psychiatric disabilities. Technology can help organize our story into a concise narrative that can be discussed within the constraints of the 15 minute med appointment.
- It’s time to get rid of waiting rooms. We need to replace them with peer-run Decision Support Centers that are part of medication clinics. Paid peers are an emerging workforce in behavioral health. Prior to meeting with the treatment team, they can help us access technology that is assistive, amplifies our voice and prepares us to participate in shared decision making with our care team.
My work serves the public sector. We reach the poorest of the poor and the sickest of the sick. Our data and publications have shown that our technologies increase engagement, reduce side effects, reduce concerns about how meds are affecting ones health, and increase peoples’ perception that medication is actually helping. We are the recipients of a 3-year PCORI grant supporting a comparative effectiveness study comparing traditional measurement based practice with our person centered approach.