Lucien Engelen: Flipping the coin from “for patients” to “by patients”

Toekomst v d Zorg Prof Lucien Engelen NijmegenAlthough I still suspect my wife may have paid extra for a non-connected holiday home in the French Ardèche, it turned out pretty well to be honest. The first two days I tried every corner of the premises (a small summer castle on top of a mountain in Les Ollièrres sur Eyrieux) to see if there was any signal at all, which felt like getting detoxed from something. Only down in the valley was it possible to get some kind of internet connection.

Besides the great time we had despite (or should I say because of) that—with great food, wine, music, books, and quality family time—it also cleared my head to get around some of the next steps we should set in changing healthcare. Since, in my honest opinion, we haven’t got up to speed enough.

Sure, great technology is entering the market and huge developments on personalised healthcare from a technological perspective are (almost) at our doorsteps. What is lacking, however, is the broader adoption and use of it. There might be all kinds of reasons for it. Leaving aside the usual suspects like privacy, finance, the age of the patients involved, etc, I really think there is something else going on.

For ages, new products have predominately been developed by industry and healthcare professionals without even consulting the targeted group. Traditional processes in no way incorporated patients. Doctors, nurses, and experts did—mostly with the best intentions—what they thought was in the best interests of patients. Sometimes even non-existing problems were solved, with industry questioning afterwards why nobody wanted their products.

Over time, some institutions and companies changed into engaging with the targeted groups during the development of their products. Sometimes this happened at the end of the chain, when the product was almost complete.

The same problem often happens at conferences, where topics about patients, family, and informal care are discussed without even one patient in the room or on stage. For this reason, we at REshape initiated the Patients Included Act to incorporate patients during all stages of the process. The use of the logo resonates that patients are incorporated, right from the beginning, solving real patients’ problems.

During my holiday, I thought a lot about what would happen if we let patients develop their own products, with healthcare professionals only facilitating with resources, knowledge, and finance. The first time we did this at REshape it was with the online AYA4 community. A group of adolescent young adults (18-35 years of age) with cancer approached my colleague Winette van der Graaf, professor in medical oncology, who has a special interest in this group. This particular group suffer from different problems than young children or older people. Having to cope with career and work challenges, infertility problems, and a huge relationship burden they wanted to reach out to others in similar situations.

Van der Graaf wanted to create a solution for them right away and asked for our assistance. Instead of creating an online platform for them, as a trial we handed them the tools, project management, and finance and let them create their very own solution. Beginning in late 2010, this programme is currently being enrolled nationwide, with every site handing every group the same modus operandi. So they solve their own problems, but, interestingly enough, the majority of the solutions they create are similar and can be reused.

This might be the only road to take in the roadmap to real adoption of the (needed) solutions for the huge problems we face in healthcare. Flipping the coin from “for patients” to “with patients” and now to “by patients” we need other skills, approaches, and maybe even other stakeholders. What if groups of patients would come up with their own solutions and put them up in a (self created) App Store to crowd fund it one patient at a time?

We “only” have to listen to them. Some say interrupting to ask questions is an effective way to have patients tell their story, but in my view interrupting them over and over again is not only rude, but also harmful, as Beckman and Frankel proved back in 1984. Their research found that the average physician interrupted his patient within the first 18 seconds after they’d started to talk.
 More recent research showed even worse metrics: it took most cases only 12 seconds. Meanwhile, we know that the average patient needs about two to three minutes to completely tell their story.

Sure, I can imagine how it is to hear all day over and over again all those stories, but 12 seconds, really? When we first came across this five years ago, I created a special role in my REshape team and named it the chief listening officer. One of the reasons for this was that a lot of professionals stated they know perfectly well what their patients wanted and were thinking. During our projects, however, we found this to be untrue (and I have a strong tendency for understatements).

Our chief listening officer (Corine Jansen) at that moment in time was working for a county broadcast network, talking to citizens on what they would love to see on the network, often with a gap between what the network management wanted or thought. In her I sensed the spirit, drive, and gentleness needed for a role to disrupt that kind of thinking, and, for the past five years, she’s created a new approach to get the patients’ perspective out in the open.

Not being a doctor or a nurse, but thoroughly experienced in informal care, she brought “home” great insights that really considered the patients’ view. In all of our projects nowadays, we incorporate this “listening phase” into the start of the project, not at the end. This way our patients are included from the very moment we kickstart a project.

If you’d like to learn more about listening skills for healthcare professionals, you could attend the first European Listening and Healthcare Conference we’re running, where experienced (and certified) listening professionals share their knowledge and skills. Many (professionals) think they do have listening skills, but have as it turns out hearing skills, which is a different cup of tea.

The changes that come out of this could really shift the way we deliver care and the way patients experience their healthcare. I really do hope that our current effort in Hereismydata, which we’ll announce in the US in mid October, will push that needle again a bit. It is one step at a time.

Considering the peace of mind it gave me, maybe next year we’ll look for a holiday house with lousy cell coverage and no internet again.

Lucien Engelen, (@lucienengelen on Twitter) is director of REshape & Innovation Center of the Radboud University Nijmegen Medical Center, the Netherlands. Faculty FutureMed at the Singularity University, Silicon Valley USA.

Competing interests: Nothing further to declare.

Read this related feature on Listen to patients first