Success, Social Value, and Personal Mission (Part One)
Pat Deegan is the creator of CommonGround, a web-based application that empowers patients recovering from mental illness to take a more active role in their recovery. Pat’s own journey began in her adolescence. At 17 she was diagnosed schizophrenia. Psychiatrists told her that schizophrenia is a disease from which nobody recovers. They advised her to retire from normal life, avoid stress, and take high dose antipsychotic medication regularly.
It turned out that the treatment was as disabling as the disorder. Most disabling of all was the prognosis of doom and hopelessness surrounding the diagnosis and treatment. Faced with a future as a chronic mental patient, Pat forged a survivor mission for herself. She vowed to defy the prognosis of doom, return to school, become “Dr. Deegan” and change the mental health system so that no one could be hurt in this way again. Over time, she learned she couldn’t transform the system alone, and now has a growing army through CommonGround working with her. Dr. Deegan is an internationally-recognized expert on recovery. She shares a message of hope to professionals, families and people with diagnoses around the world. This is her story.
Dr. Deegan, how did you get the idea for CommonGround?
After getting my doctorate in clinical psychology I took a position as clinical director for behavioral health services on Cape Cod. I enjoyed the work but soon realized that helping one person at a time was not going to help me get the mental health system to be more person-centered and recovery-oriented. As I traveled around the world researching recovery and speaking about it, I realized that we are at an important point in the history of medicine. Paper medical records are being replaced by digitized information organized into Electronic Health Records (EHRs). To my dismay, I observed that most EHRs were simply hard coding traditional clinical workflows. This isn’t the vision we started with when we saw the electronic future. The EHRs streamlined clinicians’ work and reflected what mattered to them, but patient priorities and perspectives were not taken into account in these EHRs, despite the fact it would be exceedingly simple to include them. For example, if a person is a recovering addict he or she might want to minimize opiate based pain medication after surgery. Where in the EHR is a place for that patient to voice that preference ? Where in the EHR are patients’ goals for treatment recorded and prominently displayed? If decision support information is available to doctors, why shouldn’t decision support materials be available to patients as well?
I began to realize that in this historic window of opportunity, those of us who are patients had to get at the table to insure that the EHR reflected our concerns, our strengths and views. Remember, patients are the other 50% of the healthcare equation. I thought about what would a truly person-centered EHR might look like. How can the patient’s voice best be accommodated in the EHR? What does bi-directional decision support look like? How can an EHR support informed medical decision making and shared decision making for people with long-term disorders. These are some of the important questions I developed the CommonGround web application to explore.
Primary care is a misnomer. Primary care happens in the context of daily life, not only in the physician’s office, but in the community and increasingly online. Traditionally, clinicians are gatekeepers of information, but if they don’t talk about recovery patients don’t hear about it. We decided to develop software with important information for current mental health patients provided by recovering patients. We start with the notion that those with mental disorders can and do recover, and we built a body of knowledge to help those currently struggling. The main thing for us is to help people be better informed about their conditions and their options for dealing with them in the broader context of functional and quality life.
In your view, where do you feel that patients fit in healthcare? It seems like doctors run the show.
Patients are the other 50% of the healthcare equation. We are not objects to be fixed. We are active subjects who can become empowered to partner with physicians to obtain the best health outcomes. Most treatment does not happen in the exam room. Primary care happens in the context of our daily lives. Doctors don’t run the show. Healthcare is a partnership.
Many people want to be more involved in their health care. Technology can help to re-engineer the encounter between the physician and the person in ways that are more empowering and that will result in lower healthcare costs and better treatment outcomes.
How are things going today?
We’ve been surprised and pleased by the success of CommonGround to date. We have about 50 mental health clinics using the CommonGround application in the U.S. The National Institute of Mental Health has funded research on it. CommonGround was a finalist in a global competition on Patient Empowerment sponsored by Ashoka Changemakers. We are very proud of that. We have bootstrapped the company from the beginning. We’ve had offers of venture investment or to purchase us, but so far we’ve stayed independent. We feel that in order to maintain an authentic patient voice and setting higher standards for person centered care requires us, as people in recovery, to stay independent and in control of how these person-centered applications evolve.
What kind of feedback do you get from physicians who are using CommonGround?
We find a third are champions and insist on getting the product to their patients. The middle third become converts after giving it a shot. Then we have a skeptical last third, who worry about the patient who is nonverbal, or has serious issues. Eventually with practice those docs realize that our CommonGround is an assistive technology. With CommonGround folks who are anxious, disorganized, or nonverbal can prepare a concise 1-page Health Report which assists communication with the physician.
How do you know that CommonGround is working?
We are always learning more about how CommonGround is working. Our application is used in 50 sites across the US by people with major mental disorders. It is much more than a prototype. The mental health centers have voted on the value of the application by doing business with us. Additionally, we have a formal research partnership with the Psychiatric Research Center (PRC) at Dartmouth College’s Geisel Medical School. I am an adjunct profession at the Medical School as well. CommonGround is being researched by the PRC. Our other research partners include Community Care Behavioral Health and the NY Office of Mental Health.
In CommonGround, patients prepare a Power Statement that describes what success will look like for them. Why are these important? Is there a power statement that sticks out in your memory?
CommonGround seeks to amplify the voice of patients. One of the ways this amplification happens is through Power Statements. Each person using the web application writes an individual Power Statement. A Power Statements does three things: 1) It tells the doctor who I am as a person, not just a patient; 2) it says how I want medication treatment to help me; and 3) it invites the doctor to collaborate with me to achieve my goals for treatment. Here’s an example of a Power Statement: “The most important thing in my life is working at Pizza Hut. I can’t work at Pizza Hut if I’m back in the state hospital or if I am seriously depressed. Doc, I want you to help me find a medication that allows me to continue to work at Pizza Hut.” If a doctor gives this individual a heavy dose of medication that causes sedation, will the treatment be successful? The answer is no. If this person is so sedated from the medicine that they sleep through the alarm or fall asleep on the bus, missing their Pizza Hut stop, then treatment is a failure. The measure of successful treatment for this individual is working at Pizza Hut. In effect, the Power Statement helps the physician and patient get on common ground with regards to what successful treatment outcomes are.
In our opinion, Power Statements are a disruptive innovation. They disrupt medical paternalism and re-engineer how doctors and patients work together to define the goals that guide the treatment.