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What exactly is “patient-empowerment”?

Over the years, there has been much talk on the importance of placing the patient at the center of medical talks, at making patient a partner in decisions. How are we doing in that sphere? By “we”, we mean every stakeholder engaged in healthcare and that includes us.

Patient empowermentLet’s go down memory lane to find answers. In 2014-2015, the medical world spoke of human-centricity which was a natural extension from what the FDA coined “Human Factors” back in the 90’s: health professionals would became user advocates and assess new solutions on their behalf. “They would consider the experience and needs of the user and weigh them against financial and technological needs. More than solely functional, a well-designed product should be intuitive and naturally acquiesce to the user’s overall process and environment.” (source: Proceedings of the 2017 International Symposium on Human Factors and Ergonomics in Health Care). The limitations with that approach was that end-users weren’t actually testing the product. They would arrive “after the fact”. From there, usability issues would arise. It is to be expected as professionals are not in their patients’ shoes, no matter how well they know them!

It is only in 2017 that we gained a new understanding of user experience. And we have our Dutch chapter to thank who was the first the coin the term “patient first”. Their hackathons would involve real patients, not makeshift, who would be involved in a new service or product and not “after the fact”. Their active participation would be felt and seen either as a member of the ideation team or as a mentor. This, in and of itself, was the true shift in paradigm.

And we embraced it.

We began advocating for patients and urging decision makers to take into consideration their needs.

“You have a product that you believe will alleviate pain? Seek insight from patient groups.”

“You plan on adding a new tool that you say will improve healthcare processes? Seek patients’ opinions.”

In our hackathons, we prided ourselves at building teams with patients at the core.

Patient empowermentWe believed we did well until last Spring where we had a taste of our own medicine.

Someone on Twitter called us out on our absence of patients as we were facilitating one of the most prominent hackathons in Canada.

At first, we thought that person was mistaken as one patient had pitched 4 ideas and we had a patient mentor for the other teams. Then it dawned on us that this gentleman was right: our jury of peers assessing the solutions that would emerge at the end of the hackathon included respected healthcare professionals and dignitaries but no patients! In a matter of hours, our team worked hand in hand with the organizing committee and recruited not one but two patients who did an amazing job as jurors. After all, patients’ role is capital throughout the process: from ideation to assessment. They will often be the ones benefiting from the solution. It’s only natural that they give their blessing or not.

Our lesson was learned. We should never underestimate the opinion of individuals outside of the medical sphere. Crowd-sourced knowledge has become standard currency. The crowd, collectively, is becoming increasingly intelligent and aware.

Patient empowermentWho else is better placed to gauge the quality of services than patients themselves? They are the ones suffering, they are the ones in the frontline. They have the experience. They are our “users” as in every business. Moreover, as the power of the crowd is driving the future of business with new technologies and services, individuals are now empowered to make their own health choices.

This reflection came together thanks to an informal online conversation with the Godfather of patient-centricity, Dave deBronkart, or widely known as ePatient Dave. Thank you, Dave!

Valérie DoréWhat exactly is “patient-empowerment”?