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Patient Perspectives: Is patient experience finally having its moment?

Editor’s note: Watch for Patient Perspectives, a column by Lisa Machado dealing with health care from the user’s point of view that will appear regularly in Healthy Debate.

When biotech giant Roche announced it was looking for a Chief Patient Experience Officer (CPXO) – someone with lived experience – the word on the patient advocacy street was muffled in both curiosity and speculation. “Who do you think it will be?” whispered a colleague at a patient advocacy conference, scanning the audience as we sat on stage waiting for our panel discussion to begin.

As we ran through a list of our faves, I admitted that I had thrown my hat in for the role. She shook her head, “It’ll be a doctor. Watch.”

Around the same time, Canada’s Drug Agency (CDA), formerly CADTH, was also courting patients and caregivers, seeking nominations for one “patient member” (albeit just one) with lived experience navigating health care to join its board of directors. Well-played, given the “new” organization’s stated goal to further its “Partnership principle, broaden patient engagement throughout all areas of Canada’s Drug Agency, and bring patient experience to the organization’s board-level governance.”

That there were two significant roles on offer for people with lived experience was a big deal – ask anyone who has ridden what can sometimes be a soul-sucking churn of health-care advocacy. It has literally been decades of talking, cajoling and negotiating our way into conferences, advisory meetings and focus groups while having to debate – often demand – compensation for our expertise in a sea of paid consultants and other specialists. For there to be legit positions – one a part of the C-suite – for lived experience felt like a bit of a victory and a boost for health advocates.

And when it was announced that the Roche role and the CDA board seat had been filled by seasoned lived experience expert and non-Health Care Professionals (HCPs) Lisa Petermann and Maureen Smith (yay!), respectively, there was a collective sigh of relief that maybe, finally, we were getting somewhere.

After all, just a few months earlier, I had gathered more than 80 health-care advocacy leaders on a call to talk about the barriers to fulfilling their mission. It became clear immediately that advocates are not OK. From an inability to access policymakers and government, get medications for their communities and battling constant underfunding, to a need for more health-care system knowledge, a lack of recognition of their value and badly needed peer support, the cracks were showing. Add in that many groups are filling gaping holes left by a barely functioning health-care system, and being able to advocate for others with both energy and optimism becomes really hard, if not impossible.

Being able to advocate for others with both energy and optimism becomes really hard, if not impossible.

Certainly, Roche isn’t the first company to create a patient experience role that floats within the executive team. Other pharma companies like GSK, Merck and Pfizer also have similar titles, as do many hospital systems (William Osler and Southlake are just two). The rub is that in most cases, the people filling these positions are medical professionals, which despite their expertise, only serves to perpetuate the dangerous notion that HCPs adequately understand the patient experience – which is simply not true. Roche’s decision to embed lived experience into its leadership and by extension, its entire business – if done right and fully committed to – could be its superpower.

It’s difficult to be as effusive about the CDA’s singular patient member seat since it feels a little check-boxy. Still, there’s no question that one strong voice is better than no voice at all. And, like every patient experience/engagement role and initiative, once you commit publicly to making space for lived experience, there’s no going back. At least no way back without controversy and criticism.

So, in the spirit of moving forward, what comes next? Do these positions signal a commitment to valuing the knowledge, advice and expertise of people with lived experience? Should other pharma companies be bolder in how they engage patients and caregivers, embedding them in day-to-day operations instead of maintaining arm’s length relationships around speaking engagements, funding and sponsorships? Are regulators finally coming around to the realization that making life-affecting decisions for people who are not at the decision-making table has devastating outcomes?

Unfortunately, it’s too soon to tell.

Consider this: At a recent conference focused on patient engagement, just two sessions after Roche announced Petermann’s appointment and the audience cheered the fact that lived experience was finally in high places, a lively non-lived experience panel took the stage to share the wonderful strategies and projects that their organizations had undertaken in the spirit of patient and caregiver engagement. The vibe was all about success and innovation with the intended message to patients and caregivers being, “We got you.”

Except that, without the voice of someone who could corroborate the awesomeness of these strategies and projects, someone who could share authentically what worked and perhaps what could have worked better, the message was lost. It only took 20 minutes, but there we were, once again telling the stories of others.

Will this be the year that patient and caregiver engagement become a real thing? Certainly, a C-suite CPXO who has experience engaging in the mess that’s our health-care system and a rock-star advocate on the board of an organization that makes critical drug and health technology decisions are encouraging steps in the right direction.

But how do we stay on course? Just ask someone with lived experience.

 

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  • Patti Saluk says:

    Well said Lisa! As a patient myself and part of a patient advocacy organization (CMPNN) it is wonderful to see how the mindset is changing to include the patient’s perspective.

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Lisa Machado

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Lisa Machado is a Toronto-based writer and health advocate.

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