A new initiative aims to bring research to more children at the site of care – a bold step to improve outcomes by inspiring more collaboration between clinicians and scientists.
Seattle Children’s is on a quest to bring its care and cure enterprises closer together for the benefit of our patients, and for children everywhere. The bold vision, which is part of our five-year strategic plan, will help scientists integrate their research studies into the daily business of patient care and streamline the choice for families to participate or opt out.
“We have top-notch physicians focused on delivering great care and incredible scientists focused on finding cures,” says Dean Allen, chair of Seattle Children’s Research Institute’s advisory board. “We want the insights of our clinicians to influence and inspire the work of our scientists – that’s the way we’ll deliver on Children’s mission to prevent, treat and eliminate pediatric disease.”
Integrating care and cure We want the insights of our clinicians to influence and inspire the work of our scientists.”
– Dean Allen
During the past decade, the research institute has grown from 40 to 1,200 employees, from 20,000 to 330,000 square feet of space, and from $6 million a year in grants and contracts to $70 million a year in federal research funding.
Despite this exponential growth, only about 5% of Children’s patients are being enrolled in clinical research – a figure partially attributable to patients’ lack of proximity to the scientists who are designing the studies.
“Most of our researchers are located in downtown Seattle and most of our clinicians and patients are five miles away,” explains Dr. Jim Hendricks, president of the research institute. “We want to develop a greater awareness of research at the hospital and the necessary infrastructure to make it easier for families to participate in studies.”
One of the initiative’s biggest challenges will be to overcome the physical distance between the clinical and research campuses, and to create the systems necessary for ensuring a seamless clinical-to-research experience for patients.
Looking to learn how other pediatric centers in the nation integrate research at the site of care, Hendricks sent “best practice study teams” to six centers with active research programs.
No center had all the answers, but each had lessons to teach.
What the groups saw at the Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville most closely reflects what they’d like to see implemented in Seattle. There, an electronic medical records system makes it possible to identify eligible patients when they check in – a big step forward in giving families a seamless opportunity to participate in research.
“Families expect us to challenge the status quo and develop new and better treatments; in fact, they demand it,” explains Dr. Bonnie Ramsey, co-leader of the initiative, director of the Center for Clinical and Translational Research and a pediatric pulmonologist renowned for her cystic fibrosis research. “Being part of an institution that is committed to connecting research opportunities and clinical care is a giant magnet for families seeking the best possible care for their child.”
The power of participation
By 2016, Ramsey and Dr. Bob Sawin, Children’s surgeon-in-chief and initiative co-leader, envision a system like Vanderbilt’s where patients’ confidential medical records are connected to a secure database of all the open clinical research studies at the hospital – an electronic advancement that would identify patients who are eligible for specific studies.
When patients and their families check in for an appointment, they would be invited to participate in an appropriate study right after their clinic appointment or asked if they’d allow clinicians to save de-identified blood or tissue samples to a bio-repository.
Families who opt in would be provided with information about the study while they wait for their appointment. If they have questions, a research associate would be available to talk to them right away.
At the end of the study, participating families would receive the results and findings would be stored in a data warehouse – a rich knowledge library with access for scientists and clinicians. The specimen repository would link to a similar information database and would allow scientists and clinicians to view very large sets of anonymous biological data – a powerful way to see patterns in disease processes, therapies and outcomes over time.