A first-of-its-kind initiative to enhance communication between patient groups, the medical science industry and clinical research institutions has bloomed in Illinois, with the hope that the concept will broaden throughout the country to help produce better medical innovation outcomes.

The Patient Center, pioneered by the Illinois Biotechnology Industry Organization (iBIO) and its iBIO Institute, provides critical resources and connections in order to empower patients to impact the future of research and allow researchers unique insights into patient experiences.

“The focus, and a key component, is that patients need to be more involved in influencing the clinical research that is impacting them,” said John Collins, Ph.D., managing director for Alliance Development at the iBIO Institute. “We heard key stakeholders needed to talk to each other earlier in the process. We think bringing in patient stakeholders to interact on a regular basis is going to help all parties involved.” 

The Patient Center provides programming focusing on advocacy training, curriculum development and common best practices, especially for smaller patient-centered organizations that often do not have adequate resources. It is a virtual information center for now, but the goal is to develop physical space and shared amenities, while connecting patient organizations to the researchers crucial to their mission.

“The sooner we can bring the patient voice to the table in many different aspects—clinical research, clinical trials, academic research and the activity of other initiatives at early-stage startup companies as well as some of the bigger biopharmaceuticals—the better it’s going to be for all parties involved,” Collins said.

“We realize the importance of including patients in the research process from the beginning,” said Jill McNair, director of Education, Outreach and Community Support at the Center for Information and Study on Clinical Research Participation (CISCRP). “Any time an organization is engages patients in the process, it is a win. That’s what we’re hoping the whole industry will shift to.”

McNair said she is intrigued with the concept of the Patient Center. “I think it can serve as a benchmark for the industry,” she said. “Small advocacy groups in particular want to help bring better therapies to patients, but they don’t know how to make inroads with sponsors or how to get a seat at the table. If the industry starts building that into their process, we’re so much better off.”

Michelle Orive, president and founder of Rush to Live, a nonprofit patient advocacy group for organ transplantation, served on the advisory board that helped develop the Patient Center. She points out that her organization’s insights and experiences can be of particular value to the research community, but reaching out has been a challenge because of the group’s limited resources.

“Because I am an organ transplant patient myself, I have that instant connection with patients and they share stories of their medication, complications, side effects and challenges,” Orive said. “It’s a phenomenal thing for us to be able to tell researchers what we are dealing with. It gives us a voice that we might not otherwise have. It’s a wonderful opportunity for some of the smaller advocacy groups out there.”

The Patient Center is “neutral ground where patient advocacy groups can come together,” said Jacqueline Dominguez, executive director of the American Liver Foundation’s Great Lakes Division, who also served on the advisory board for the initiative.

“Patients experience similar kinds of issues, challenges and struggles,” she said. “Having a place where we can explore those same issues helps give us a united front where we can brainstorm on behalf of the patient population.”

Dominguez said the center could be of particular value in clinical trial development. “It gives us a place to come together and discuss a specific disease state. We could help researchers join forces in developing protocols and clinical trials that would be most beneficial to patients, and how to leverage those trials to help those precious dollars go further and be even more effective.”

iBIO is a life sciences industry association of more than 500 members, including life sciences companies, universities, academic institutions and service providers. The official launch of the Patient Center will be April 20 at the iBIO IndEx, which is iBIO’s annual signature industry event.

The national Biotechnology Innovation Organization (BIO) and Horizon Pharma provided funding to establish the Patient Center. Robert Metz, senior vice president for Business Operations & Advocacy at Horizon Pharma, said his company dedicated resources to the initiative because of the promise it holds.

“Being able to visit a patient advocacy hub provides opportunities we otherwise might not have,” Metz said. “It’s one of the reasons why Horizon Pharma supported this. The industry is interested in accessing patient populations for clinical studies, and patient advocacy groups are in contact with patients afflicted with certain diseases.”

iBio gave invaluable support to Horizon Pharma in its early days, when it began in 2008 out of a coffee shop, Metz added. “This is an opportunity for us to give back, and it’s the right thing to do. The Patient Center provides a place where patient advocacy groups can better network. It’s a nice communications venue and provides an opportunity to accelerate clinical study timelines, which in turn can accelerate product access.”

Connecting stakeholder organizations with patients is a key to improving health outcomes, Collins said. “We haven’t found this sort of one-stop shop anywhere else,” he added. “We’re hopeful that, in time, the Patient Center can grow into having more of an impact on a regional and potentially national level.”

Lisa Catanese, ELS, has been a medical writer and editor since 1986, covering clinical trials, medical research, newly approved drugs and devices, consumer health education, continuing medical education and more. She is a member of the American Medical Writers Association and is certified by the Board of Editors in the Life Sciences. Email Lisa@BlueBlazeCommunications.com.

This article was reprinted from Volume 20, Issue 07, of CWWeekly, a leading clinical research industry newsletter providing expanded analysis on breaking news, study leads, trial results and more. Subscribe »