There are two reasons I love coming to work every day. First is the opportunity to help patients around the world take control of their health care. Over the next few months, I will be blogging about some of these patients, and the problems that Patients Know Best helps them solve. And second is the intellectual challenge.
Because what we are doing is hard. By creating the world’s first patient-controlled medical record, we are helping to transform the health care system. This is wonderful, as it benefits all patients, but it is hard, as it means rethinking every process. Every day, we have to figure out the answers to some fascinating questions.
For example, patient control means data are shared ethically, at every step of the way clearly due to the patient’s informed consent. But it also requires planning well in advance to manage the encryption and security that move data at the patient’s behest. How do you allow researchers to ask questions across millions of patients’ medical records when each of these patients has encrypted their records using a different key, and none of the keys are available to the researchers?
Control also means patient responsibility. When someone forgets their password to a web site, they ask the administrator to reset the password. But when the patient is the administrator of their account on Patients Know Best, how do you allow them to reclaim it?
And of course the point of control is the contribution that the patient makes to his or her health. This is the contribution that makes the patient part of the medical team, rather than simply a recipient of its care.
But because most patients have never seen their records before Patients Know Best provided them, few patients already have the skills to fully contribute to the work of medical professionals. So our software must explain the data to the patient, train him or her to use it, and enlist the help of others like family and friends who take on responsibilities for the patient. How do you give patients understanding, the skills, the network, and above all the confidence to say that they know best about their health?