‘Personal medicine, power statements and other disruptive innovations in healthcare technology’ by Pat Deegan

patdeegan_photoI’ve just found this exciting article by Pat Deegan which she wrote for the Scottish Recovery Network (SRN). In my humble opinion, Pat’s CommonGround approach will have an enormous impact in the mental health field.

The SRN writes: “Given her hugely influential writing and personal reflections, research interests and involvement in various policy and practice initiatives, Pat Deegan is arguably the single most influential person within the international recovery movement. Her work today is strongly focused on shared decision making approaches and here she describes how the CommonGround approach, which she has developed, has real potential to encourage systems change towards recovery.”

‘At 17 years old, I was hospitalized and diagnosed with schizophrenia. I was told I had a lifelong disease like diabetes and could never be well. My psychiatrist advised me to avoid stress, retire from life and take heavy doses of antipsychotic medications for the rest of my life.

In the beginning, I followed his advice. I stopped attending school. I sat in a chair, smoking cigarettes and drinking caffeine all day. I swallowed pills faithfully, hoping the pills would make me well. But instead, I sank deeper and deeper into chemical hibernation.

I was maintained outside of the hospital in this way for many months. My doctor said I was “lucky” to be living outside the hospital, but I felt I was not really “living” at all. My psychiatrist was pleased with my progress. In a peculiar way, he perceived me as a treatment success. That is, treatment had resulted in reduced healthcare costs, a reduction in readmission rates, and increased community tenure.

My experience, however, was of living in chemical restraints that created walls as thick and impenetrable as any institution, leaving me isolated from my world and alienated from myself. I was living in handicaptivity, and I lost years of my life in this netherworld.

Recovery began for me when I revolted against the prognosis of doom I had been given. I wanted a life. As I told myself at 18 years old, “I want to change the mental health system, so that no one ever gets hurt in it again.” That was my survivor mission. That was the hope and the dream I organized my recovery around.

Through experience, I learned psychiatric medications are not magic bullets, no matter how much drug advertisements would have us believe that. Pills can’t do the work of recovery for us. And the medication we use should not disable us. Maintenance and “stability” are not acceptable treatment outcomes.

We must raise the standard of care to recovery. The treatment outcomes that matter are the ones that help us live lives of our choosing, indistinguishable from the rights and responsibilities of other non-diagnosed citizens. Anything less is a waste of public funds. Recovery means changing our lives, not just our biochemistry!

If recovery and wellness are to become the new standard of care, we must dramatically transform how we work with treatment providers, including psychiatrists. But training professionals to work differently has poor outcomes. Meta-analyses show that ‘lecture plus demonstration’ result in only a 5% transfer of knowledge into action [Note 1]. Coaching in the workplace is dramatically more effective but is cost and time intensive.

What would happen if we had tools that empowered us to train practitioners in recovery, while they were working with us? What would happen if we had tools that helped us redirect the conversation with our psychiatrists, towards recovery?

Creating digital tools to disrupt practice as usual, while empowering us, is what I am working on. Today I have a small company run by and for people with the lived experience of recovery [Note 2]. We make web applications and mobile technologies. One is called CommonGround.

CommonGround helps us prepare to participate in making the best choices for our treatment and recovery. It helps to prepare us to participate in shared decision making. It amplifies our voice and brings our expressed needs, strengths and concerns to the center of the care team.

CommonGround empowers us to change the conversation with our psychiatrists, to shape treatment to support our recovery and to become experts in our own self-care. There are over 50 organizations and 15,000 people using CommonGround today in the United States. Here’s how it works:

We begin by getting rid of the waiting area in outpatient medication clinics. In today’s healthcare environment, there is no time for waiting idly in waiting rooms. Instead, we convert the waiting area to a peer-run Decision Support Center equipped with tablets and/or touch screen computers with broadband internet. People arrive a half hour prior to seeing the psychiatrist, in order to prepare their health report.

In the process, peer staff help people identify their Personal Medicine and its essential active ingredient. Personal Medicines are the things we do, not what we take. For many of us, the path into recovery means finding the right balance between the medication we use and our Personal Medicine. Personal Medicines are entered into the computer program, and we let our psychiatrist know how we have been using our Personal Medicine since the last appointment.

Additionally, peer staff help folks create a Power Statement. A Power Statement does three things. First, it says who I am as a person, not a patient. Secondly, it tells my doctor how I want treatment to help me. And finally, it invites the practitioner to collaborate with me in making a shared decision about the next steps in my treatment. Power Statements are also entered into the computer program and appear prominently on the health report.

Next, the web application invites us to watch videos of people discussing their recovery and to explore an online recovery library to find strategies and inspiration. Additionally, folks complete a survey that generates a health report including: my recovery, how I am doing, my concerns (if any) about prescribed medications, and my goal for the appointment. The health report is fully transparent: i.e. we see what the care team sees. No secrets! Additionally, folks can explore their own data to find recovery trends.

The health report is available to the psychiatrist, and during the appointment we review it. Together we arrive at a shared decision about the next steps for treatment and recovery. This helps the practitioner focus less exclusively on symptom reduction and more on recovery outcomes that matter to us.

Research on CommonGround is showing promising results. I believe that if we work at it, we can shape the future of person centered, recovery-­oriented electronic medical records. If we don’t, I fear no one else will.’

Note 1 Fixsen, D. L., Naoom, S. F., Blase, K. A., Friedman, R. M., & Wallace, F. (2005). Implementation research: A synthesis of the literature. Tampa, FL: University of South Florida, Louis de la Parte Florida Mental Health Institute, The National Implementation Research Network. http://cfs.cbcs.usf.edu/publications/detail.cfm?id=137

Note 2. See http://www.patdeegan.com’