Editor’s note: We strive to include patient voices in our work and to foster an ongoing conversation about clinical research with the people who need better treatments. We've decided to take a very literal approach to that core philosophy. I’m very excited to introduce you to Erin Moore: a pioneer who is leading the way in a new patient partnership with us. As our first ePatient Advisor, Erin will be blogging, guiding us through feedback, and keeping the patient voice front and center. Please join me in welcoming her to the team!
We've been hearing more and more about ePatients. What is an ePatient and do you consider yourself to be one?
I am a former marketer, turned stay-at-home mom, turned ePatient and health care innovation consultant. The story of how that path unfolded for me is an interesting one. In 2010, my son Drew and his twin sister were born, and Drew was diagnosed with cystic fibrosis (CF), a progressive and fatal genetic disease primarily affecting the lungs and digestive system that does not currently have a cure.
The first introduction into the world of Cystic Fibrosis often comes from the Cystic Fibrosis Foundation. It’s the first thing that appears when you Google the condition, and they have such a rich partnership with the people and families living with CF that they immediately reach out to you to provide education, connection and hope. I quickly became a fundraiser for them, and after about a year was invited to serve as the State Advocacy Chair in Ohio, meeting with local politicians to share the policy agenda of the Foundation enhanced with a personal story about how the decisions they were making were impacting my son and my community.
It was around this time that I started to understand the power that my story held. My expertise was my experience and in order to create the change that we so desperately need in the CF Community. I not only had to speak up but I had to find a way to empower others to do the same. I became a more vocal advocate for my son and his unique needs both inside and outside of the clinic room and at the point of care. I created the change that I needed, sharing what I was doing, and embracing learning more about the experiences of my peers. This is how I define being an ePatient: using what I have and what I know to influence positive change in health care.
What factors have contributed to the rise of the ePatient?
The main thing that I believe has contributed to the rise of ePatients is the social connections that allow us to learn from one another. In the traditional top-down model of medicine, it was doctor who knew best. And I do believe there was a time where that was the case. But today we are living in a world of abundance—abundance of information and of access—and you can’t be smarter than the network. People living with chronic conditions have capitalized on the knowledge of their peers, the lived experiences of those who have walked the same path before them, and are combining that with the expertise of their care providers to identify new and novel solutions. Knowledge is power, and we are now able to enter into the health care relationship equipped with information to partner with our care teams in an active role, moving away from simply being passive recipients of care.
Do you have any experience with clinical research?
The clinical research that I’ve been involved with has been limited given the age of my son (6) and co-morbidities that often put him outside of the inclusion criteria. We did participate in an imaging study about a year ago to better understand the value of MRI to evaluate lung health. The current method for imaging studies in the CF community is a CT scan—which comes with its own set of risks—and patients and parents are often left to weigh those risks against the benefits. The informed consent process felt overwhelming even for a health literate adult to digest, and when my son would ask what this entailed and I couldn’t simplify it for him, I realized the need for better communication and shared decision-making tools in this space. After all, these services were supposed to be designed to help him.
While I supported the idea and appreciated that we were trying to find ways to minimize the risks, I wished that the process felt more integrated because the burden of a chronic illness is great. This research required additional visits to the hospital, one of the places most dangerous to people living with CF because of the environment in their lungs and their susceptibility to dangerous infection. It required a sedation—something I wasn’t willing to do—but thankfully the research team worked with us to obtain the scans without sedation. And we were given a copy of the report at the end of the scan which I very much appreciated. Unfortunately his doctor couldn’t take action on the report since she wasn’t one of the clinicians doing the research, but that’s what I mean when I say I wish it was more integrated.
I’m really interested in working with researchers to design clinical trials that not only meet the needs of the investigators but also of the participants and their families.
What value do you think research brings to the participant? To society?
I think there is a tremendous value to research that is under-appreciated by many, and I think it’s a design problem. For me and for many in the cystic fibrosis community, research is our hope. If my son had been born 50 years ago, there is a real chance that he wouldn’t have lived to be 6. Not only has research helped to create many of the life-changing medications that we have access to today, but it has allowed many people to make a contribution to something for the betterment of themselves and of their community. But I don’t think people see that.
There’s a huge opportunity for clinicians and researchers to share feedback in a way that highlights the valuable role of the research participant which could in turn encourage future participation or the sharing of the value of participation with their peers.
What keeps you up at night?
I wish connections and intersections were more seamless and natural. I am always stumbling upon good people or good information online, and I’m also running into people looking for those same things. I can’t possibly serve as a go-between for all people and all information, but I do try to share what I know on places like my blog, Twitter and Facebook hoping that others doing the same will enable some of these necessary intersections more seamlessly until a better solution comes around.
I also worry that we’re not going fast enough. I read about children and adults who continue to lose their life to cystic fibrosis and other diseases every day, and I dream about ways that we can move faster to change this.
What keeps you optimistic on tough days?
An endless hope that people like my son Drew can be well, retaining the autonomy to make decisions in their life according to their own priorities, not according to cystic fibrosis.
What motivated you to say “yes” when we asked you to be an ePatient Advisor to the Lilly Trials team?
The way that I was invited to join is what compelled me to say yes. I was presented with a “crazy opportunity” to try something new and learn together. It had a stone soup feel to it—we don’t know what we’re looking for or trying to make, but lets see what we get what we combine what you have with what we have. Rather than asking me to work on your agenda, you invited me to share mine, and I’m really looking forward to seeing where this will go!