Tag Archives: Patients as Partners US 2019

On being heard

In the comments following the previous blog my sweet friend Nancy expressed concern that perhaps the conference I just attended had been a waste of my precious time.

Nancy is correct about one thing–my time is very precious.

As for the conference, I was a panelist. However, my panel was the very last on the schedule. Those of you who attend conferences know that by the final slot, 30-50% of the attendees have slipped out the door, as most of them have flights to catch.

Somebody has to go last and I suppose it may as well be me. And there were patients scattered throughout other presentations. However, most of those patients had scant experience in clinical trials. You wouldn’t ask a podiatrist to serve on a panel specifically about cardiology, so why the more lax approach toward patient experts?

Sadly, I think this is because our position at these conferences is yet relatively token; that we are not actually recognized as experts.

I agreed to attend this conference as I viewed it as an opportunity to listen and learn. And I made absolutely sure that my (our) voice was heard, as there were ample opportunities to comment or ask questions.

Generally my viewpoint was rather contentious. The first time I went to the mic it was because a presenter was describing clinical trial participants as ‘heroes.’ I let him know how distasteful I found that word. Patronizing. Over the top in a ‘let’s just put ten gold stars at the top of the page’ sort of way. Trite, cheap, inaccurate. A wink, if you will. Even if it is well intended.

I didn’t choose this path, it chose me. And calling me a hero isn’t the sort of recognition I want. Give me something solid, like supportive services.

Another time a panel was addressing the issue of enrolling underrepresented populations in clinical trials. This is all good, I said. But make darn sure (see above) that you understand that clinical trials are time consuming, often require travel, and are more costly. That it’s important to make certain participation is sustainable. I was stopped by a gentleman later who asked if it was true that only drug was paid for in a clinical trial. In my case, yes.

And of course I expressed my frustration with the whole more is better data thing. I view the emphasis on returning data to patients as a bit of a smoke screen. ‘I am a data cow’ I said–my outlandish number of scans evidence.

I am undoubtedly the square peg at these meetings—but then again, I have been places that most will never go and I feel it is vitally important to share this experience. Gratifyingly, a number of people took me aside to thank me for speaking up and out. It felt good to have my viewpoint acknowledged.

Tomorrow I will be participating in another meeting, this one with the FDA. I think it could be interesting 😉

Here we go again

Last week I traveled to Philadelphia to participate in the Patients as Partners US 2019 conference.

It was an honor and a privilege to be invited. But also, at times, incredibly frustrating. And that is because I am highly skeptical when it comes to the rhetoric surrounding Patients as Partners.

Like most events of this ilk, there were lots of people from industry, regulators, a few clinicians and perhaps a researcher or two along with a tiny handful of patients. Self described as ‘the only conference in the US that demonstrates how to involve patients throughout the entire medicines development life cycle to drive greater efficiencies in clinical research‘, the sessions had titles like ‘What does a patient-focused clinical trial really look like?’ Patient centricity, patient engagement and the ‘democratization of patient data ownership’; all were topics of discussion.

Per usual, though patients were the purported focus, there was far more talking about us than speaking with us.

This confounds me. I mean, with three phase I clinical trials under my belt, I am a bit like an astronaut who’s made multiple moon shots. And, rather than asking me, the astronaut, what space is like, the non-astronauts are up there on stage describing my experience. Talk about out of body.

It reminds me of the time someone asked my (then) husband and I about how the labor for our son had gone. My husband, the person who hadn’t given birth, responded ‘easy.’ I, who had struggled mightily to birth a ten pound four ounce baby vaginally, demurred. I was the authority on my own experience, not a by-stander.

When it comes to clinical trials, I have an equally hard time listening to the non-experts opine.

The fact that I and other patients were even invited to this conference (and in some cases to take the mic) remains groundbreaking. However, patient engagement and patient centricity and patient involvement from the ground up would seem to imply that patients should play a far greater role. Put patients on your planning committee. Take us out of the audience and put more of us up on the stage. Involving us every step of the way–‘the entire life cycle’–might just result in ‘greater efficiencies.’ Because some of the most useful data is anecdotal–data you will only capture if you give patients an opportunity to speak and–you listen.