Most times when the word “participatory” enters my lexicon it is closely followed by the word “medicine”. I’m a fan of participatory medicine. If you don’t believe me, then you can look here, or here, or here for written proof.
Participatory medicine is a care model in where the role of the patient is active, enabled, and emphasized. Participatory medicine requires the “mindful” inclusion of the patient in the care delivery process. When you see online patient communities forming, then you see participatory medicine at work. You will also witness shared decision making, patient participation on the treatment team, and evidence based patient choice. The director of the U.S. National Institutes of Health has been quoted as saying:
As opposed to the doctor-centric, curative model of the past, the future is going to be patient-centric and proactive. It must be based on education and communication.
These are the types of sentiments that make someone like me very happy. The fact that I get to play a role, even though quite small, in this movement is the kind of intrinsic motivator that gets me up each day happy to do my work in Connected Health.
In Connected Health we design technologies meant for patient engagement. They are the communication lines that extend outside of the eight minute patient visit and into the lives of patients wherever they are when healthful decision making counts. As a result, another participatory term set is beginning to exit my mouth more frequently. That is, namely, participatory design. Participatory design, also known as cooperative design, emphasizes active inclusion of all stakeholders, even those that do not know how to use Photoshop, in the design process. Key to this end is the end user. In our case that means the patient. By using participatory design, we are able to create environments that are more responsive and appropriate to a patient’s cultural, emotional, spiritual and practical needs. User empowerment is built into the core of this process.
So, what if patients were crowd-sourced more regularly to solve all of those challenging patient engagement issues? For example, many of the biggest challenges I see on provider websites occur because it is challenging for an employee of a health system, the ones actually making the final decisions, to release their mind from the confines of their day job. This usually means that the content of the public website is architected in the way that employees see the organization: by department or facility. Problem is, this gets in the way of patients trying to find the information they need to be more healthful. Patients shouldn’t have to navigate 5 layers deep to find content specific to their condition or health concern. Patients won’t work that hard. Instead, the hub of digital patient engagement should have, at its core, the patient user experience.
Not being new to the public website creation rodeo, I’ve found the process and final product to be greatly improved through the addition of patient voices throughout the entire website design process. I’ve never met two patient populations that are the same, so while there is general advice on tailoring a message to patient needs, insight should always be collected from the target market in question. This insight informs the nuts and bolts of information architecture and the engagement of graphic design.
As a result, a one and done approach to patient feedback is good. An iterative approach to patient feedback on site design is better. Co-designing a site with patients? I would love to see that on every provider website. By using participatory design to reach out to patients in the beginning of the relationship, with the website that engenders a culture of participation, then it makes it that much easier for that participation to be embedded throughout the entire collaborative care model.
