Current Challenges in Patient Centricity

ACT: What do you think are currently industry's greatest challenges in patient centricity?

Keunen: Patient centricity—that's a big topic, indeed. Most projects start as a business, so everybody has to focus on the revenue at some point, right? With that, unfortunately, many people focus on serving who will pay, and who will pay is often a provider, a sponsor of medical research—rarely the patient, right? There is a lot of focus on the institutions, on the companies on that side, and not that much on the patients, so the patient is usually a second thought unfortunately and for some it's a thin layer of varnish, which is very unfortunate. That's a real big challenge, because there's a conflict of interest somehow between the revenue side and who we’re serving in the medical sector, or health sector. It's a bit unusual because there's this triangle between the patient, who is paying, and who is providing the service, right? It's very hard to focus on the patients. At Andaman7, we try to really focus on the patient by first building health records for the patients, and then use it for something else after, so that's one of the approaches that we try to have.

ACT: What should sponsors currently be focusing on the most to improve patient-centricity?

Keunen: That's a good question and tough to answer too. Contributing to research per se is interesting for some patients, but not all of them, right? For seriously sick patients, those wanting to contribute to finding a treatment for themselves or for their close ones—that there is a very strong motivation. For others, there's a motivation to contribute to the common good, which is good, but it's not a very strong focus. The majority of patients have more important things to do than contributing to research, and focusing on managing their health issues is very important for them, whether they are significant or less serious, so they need to focus on themselves before focusing on research and helping others—it's only human, it's natural, right?

To get more patients contribute to research, we need to do more. We really need to offer them very interesting tools. Sometimes financial contributions are needed, let's face it, but very useful tools can also be a good solution, for example, a personal health record, or some tool to help them manage their health information or insights, but it has to be really focused on the patients, and not as a second thought, as I was saying earlier. Then, if we provide a very useful tool to the patients, the part that is about research and collecting of data with the consent of the patient must be very easy to do. It should be a no-brainer for the patients. I know by experience that there is more difference in an application that is just slightly better, but much easier to use, will make a huge difference. The patients will keep using it, otherwise they won’t, because it's just a bit too difficult, and if it took you, as a company, three years to build, it’s pretty unfortunate they don't use it. Building tools very useful for the patient is one, and second, it must be very well-designed and very easy to use, so that the part that is contributing to research is very easy for the patients. They don't have much to do.