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Participation

Making Research More Accessible, Attractive and Engaging

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Editor’s Note: Erin Moore is a marketer turned ePatient and health care innovation consultant. Her life story has been deeply affected by all five of her children, but particularly Drew, her 8-year-old son who has cystic fibrosis. She is passionate about building connections between all of the stakeholders in health care, working to identify unmet needs, design and test innovations to improve care and outcomes, bridge the patient and clinician communities, and ensure the perspective of families and patients are represented in all health care improvement efforts. Erin was the first ePatient Advisor for Lilly Trials.

erin moore bio

The other day I stumbled upon this article and video about participation in pediatric research, and I loved it. I loved it because it’s exactly what we need: innovation around pediatric clinical trial participation. One of the big questions posed in the article is, “Shouldn’t we move with the times?” The answer is yes. Unfortunately the “times” moved a long time ago – enter Google, Apple, Amazon, Travelocity, Wikipedia, etc. – while health care still uses fax machines to communicate. The real question that health care should be asking is “How can we catch up.” It’s really no wonder that clinical trial recruitment can be a struggle with all of the barriers that are put up to “protect” participants, or people, as I like to call them.

Last summer, we participated in a research project at our hospital involving a series of scans. I flipped through the informed consent and signed my name. Then my son asked me what was going to happen, what they were going to do to him, what the machines looked and sounded like, how long it would take, questions that I didn’t have the answers to. These were the things that were relevant to him, and having a way to explain it to him so that he understood it would have improved his confidence in participation, both now and perhaps in the future. The only resource that I had was a stack of papers that I’d barely read through to try to find the answer he was looking for. The one thing that I did know was that another friend had participated, and I called to have her child explain it to mine. “It’s like the inside of a really super big paper towel roll and they put you on this little table and it scoots you in and then it sounds like construction workers building but it was okay because they put on a movie for you to watch and you get to pick whatever movie you want! And they give you a gift card so you can go to the gift shop and buy a new toy!” He was sold. All he needed was to hear it from someone he knew, someone like him. That information did not exist within the informed consent, yet it was exactly what he needed. How might we use the knowledge and experiences of the experts, the people living through the research, the “participants,” as some like to call them? Why do patients remain the most under-utilized resource in the health care system?

I had a conversation with someone the other day about embracing the innovative spirit of patients and families who are creating solutions to their own problems every day. If the pill dose is wrong, we cut it in half. When holding a nebulizer becomes tedious, we fashion up a face mask using the strap from our goggles. Have you ever seen a tennis ball on a walker to make it move more easily? We patients do this with medication storage and therapies and appointments and all things related to our life and health when they don’t work for us the way we need them to. Don’t believe me? Read this blog post by our current Chief Technology Officer at the United States Department of Health & Human Service, Susannah Fox on how patients are hacking their health care (don’t skip the comments).

So what does this mean for drug development? I don’t have the answer for that. I do believe that things like tiered-consent are a step in the right direction. It’s not that pharma doesn’t have great solutions; they just often don’t really know what the problem is. I’m thinking about how they might learn by listening, try new things, and innovate differently. I know that there are protections in place to keep people safe, but perhaps its time to revisit those, to see if what is designed to protect us is actually preventing us from innovating in this space, hurting us in a different way.

Blog post originally appeared on LillyPad.

Tags: Innovation,

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