July 26, 2013

In the news

Our colleague and friend Kevin Leonard passed away on July 15th, leaving a legacy at our Centre that cannot be forgotten. Joe Cafazzo spoke at the ceremony celebrating his life. Below is a transcript of his memories of Kevin, expressed at the event.

‘I was a student of Kevin’s and I considered him a mentor of mine until the very end. I want to tell you about what he taught me, not just in the academic sense, but also about life and living. I don’t mean to speak for all of his students and professional colleagues, but I think they’ve shared similar fantastic experiences knowing Kevin.

When I first met him I had been working in healthcare for more that ten years. I thought I knew it all. Over the course of the next few years he would demonstrate that I knew nothing – or at least that I was looking at the world with a particular lens that inhibited me, and many of us, in creating effective change in this world we live in.

I think for me, working in a hospital for so many years can desensitize you. That the patient experiences you encounter are much like the ones before them, that you forget that for the patient and the family care giver this is perhaps the most traumatic period in their lives. It’s new to them, they’re scared, they’re often ill-informed – they don’t know what’s happening to them, or what’s going to happen to them next.

How paternalistic we had become. That we knew best. That we state with confidence that the patient was always getting the best care, even when they were not.

Kevin taught me to view the work I was doing through the filter of the patient’s experience – and not simply the primary outcome. He encouraged me to actually talk to patients about their perspectives. How they felt about their role in their own care.

It gave me a revelation on the capabilities and the willingness of patients to engage in their own care. A perspective that I was previously – perhaps naively – was somewhat condescending.

It was Kevin himself that exemplified his own vision. His show of strength and tenacity, despite the adversity he experienced with his own health problems. He would never stop. Kevin always pointed out that there many more patients out there that needed our help to allow them to engage as much as he was able to do.

The fact of the matter is that Kevin’s vision didn’t really require much money or any fundamental re-tooling of the system. It was simply a perspective that patients had the ability to contribute more actively in their own care, as true partners, if we only allowed them to. That patients could be on an even playing field if we’d only allow access to their own personal information.

Recall what decision makers and providers in our healthcare system told Kevin when he began knocking on their door a decade or more ago to tell them about his vision; that patients needed access to their health information to have a chance in engaging in their own care: “Patient’s don’t want that information”, “They won’t understand it”, “We need to protect their privacy and unless we can absolutely assure that, we won’t do it”, “We need to protect patients from themselves”, “It’s going to increase our workload”, “It might lead to litigation”.

Who would dare tell Kevin such things in recent years? How far have we come from those antiquated perspectives. People wouldn’t dare speak in such a way today, at least not openly like they did in the past.

It’s a testament to the influence he made over the years in changing attitudes, in changing our worldview of the patient as a partner in their own care.

Kevin took every opportunity over the years to speak at events, to publish papers, to give a lecture, to talk to students, to travel long distances, just to take the stage on a panel for 10 minutes of speaking time. We were recalling the time that he had to be physically helped onto the stage in order to make his appearance in Quebec City, just to satisfy his tenacity to get his message across to another group of policy makers, healthcare providers, privacy advocates – anyone who’d listen.

I think many of us have seen Kevin when he was less than well, still attending a meeting, still attending a conference, still knocking on doors. How many of us could say we were so committed to a cause that we would venture out so often when we weren’t feeling up to it? Leading by example – that was Kevin Leonard. Personifying the ability of patients to overcome diversity.

We cannot forget Sandra during those times. The often forgotten informal family caregiver. Where would Kevin have been without her? Her efforts allowed us to have many more years with Kevin than we would have had. The relationship between them was symbiotic. I know you didn’t do it for us Sandra, but thanks for keeping him well and stopping him occasionally from attending that meeting or conference, so that he could save his strength for the next time.

There were also the little things that Kevin taught me. When I struggling to finish the write-up of thesis, he said to me. “Just do it Joe – tomorrow you can be famous!”. It really took me down a notch, which I needed. The fact that during all this time he was an active playwright and was actually staging plays, reminded me of the creative side of Kevin. How important that is ones personal life and how that creativity manifests itself on your professional academic work. And the random experiences we had – walking through Caesar’s Palace in Las Vegas and Kevin walking up to the roulette table and just destroying it. “I have a system…”, he says to me. ‘Where did that come from?’ I ask myself.

In the end though, his passion really came back to his vision around what he called Patient Destiny – patients as partners in their own care.

I don’t want anyone to think that Kevin didn’t fully realize his vision. Perhaps we don’t have the system in place that he envisioned today, but his work shifted deeply entrenched views of the roles of relationship between provider and patient, re-asserted the patients fundamental right to access to the health information, and exemplify the patients as full partners in their own care.

We’ve lost a tireless advocate of the patient, a trusted academic, and a true friend. But we are all better, more enriched, more enlightened people for knowing him.

Kevin exemplified the strength and tenacity in patients that allows them to engage in their own care, even when the system doesn’t allow. No matter the personal health obstacles, Kevin went out of his way to further his vision of a more inclusive healthcare system, where patients were true partners in their own care.

In keeping with this vision, I am very pleased to announce the establishment of the Kevin J. Leonard Award at the University of Toronto. This award will be given annually to an outstanding student of the Institute of Health Policy Management and Evaluation who has furthered the cause of patients as partners in their healthcare, who exemplifies the ideals and principals that Kevin perpetuated with his own students and colleagues over the course of his career and his personal life.

IHPME and The Centre for Global eHealth Innovation at Toronto General Hospital have committed funding to the establishment of this award through the Office of Advancement at the University. We welcome contributions from private individuals and organizations. We look forward to awarding this for the first time next year with the help of Sandra’s guidance.’

We leave you with one of our favourite talks. This is Kevin at the 2005 eHealth Conference introducing his book in which he openly talks about his personal health struggle and patient engagement in Canadian healthcare. Following this engaging talk, Kevin was hospitalized for 3 months. He bounced back and continued his work with his usual energy, passion and dedication. This was Kevin Leonard.