Patient-centricity is bound to be one of the most ubiquitous industry buzzwords of 2020. Every party involved in healthcare has a vested interest in more patient involvement, from the way information is collected to the way doctors interact with patients. Already, many organizations in the space are throwing the term around, but as a community of patients and caregivers, how are we defining the term?
Definitions vary, and that is an issue. Currently, patient-centricity exists as a (somewhat) self-explanatory idea, but when a myriad of organizations are all trying to implement their own version of an idea, there is bound to be unnecessary effort and misdirected work.
One definition, based on interviews and literature reviews define patient-centricity as, “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family.”
But, in some ways, it still doesn’t include an important element. The definition above only states that patients should be involved in every stage of their own care. At TREND, we take that as a given. We believe that medical collaboration should occur on level ground, where doctors work hard to educate their patients. Most doctors have been embracing this kind of treatment for some time, to the benefit of patients and medicine at large.
The missing element is the amount of power that patients and patient communities now have to influence the treatment of their own diseases. Patient-centricity is not just about doctors maintaining open lines of communication with patients—it is about patients being able to accelerate the development of treatments with their own efforts. With the advent of the internet, a new kind of progress is taking place. Patients and caregivers are taking matters into their own hands and organizing communities around improving treatments. In many cases they are doing their own R&D. They are turning social media groups into grassroots registries. There are a growing number of parents who start drug companies to help their children.
Disease communities around the world are accomplishing incredible things every day, and the definition of patient-centricity needs to include those accomplishments. Patients are not sick people who spend their time hoping for cures. They are empowered to contribute to the creation of the very treatments they need, and it’s no surprise that they are some of the most effective stakeholders. For this reason, patient-centricity needs to include the progress being made by patients towards their own cures and treatments. Only then will we have a comprehensive definition that allows us to work more effectively toward a better end.