50% of the equation

Forbes (?!?!) covers Pat Deegan’s efforts to empower mental health patients by guiding them into playing a larger role in their care decisions and participating in their health care records.

…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.