Across our health system, members of Essentia Health’s Patient and Family Advisory Councils strive to represent patients and families, ensuring our health system is making better decisions about how to deliver care. More than 180 community members participate in this important work.
|Essentia's Institute of Rural Health is developing a "Super Council" to feature representatives from patient and family councils from all three regions.
Last month, two Essentia Health patient and family advisory council members traveled to New York to participate in the Institute for Patient- and Family-Centered Care’s (IPFCC) seventh international conference. Wade Roseth, of Duluth, and Jeanne Riese, of Barnes, Wis., were joined by two researchers from the Essentia Institute of Rural Health – Cathy McCarty, Ph.D.,and Irina Haller, Ph.D. The group had been invited to present their research, which will use technology to communicate quickly across Essentia’s geographically vast service area.
The research is a critical element in the EIRH’s development of a new “Super Council,” which will feature representatives from patient and family councils from all three regions. When it launches this fall, the “Super Council” will meet monthly, using state-of-the-art technology to share information.
“There’s definitely a need for the Super Council because we don’t have a communications vehicle across all of our patient and advisory councils,” says McCarty. “Where this is critically important is when it comes to research and grant deadlines. Often, we are unable to meet them because we can’t share documents and the necessary information quickly enough with our patient partners. With new electronic platforms, and a monthly meeting schedule, we’ll be able to ensure that we can meet deadlines – whether it’s for a grant or a journal article.”
Another goal for the group is to develop strategies, tools and lessons to help guide others in creating successful research partnerships with patient and family councils.
“The Super Council will serve EIRH by providing information in a timely manner, so that it can support proposed research projects, ongoing research and dissemination of information,” explains Roseth, an Essentia Patient and Family Advisory Council member who will serve on the Super Council and was one of the New York presenters. “The existing councils serve a purpose that will meet some needs of the EIRH, but cannot meet requests from EIRH that are time sensitive. With technology, the Super Council will provide the researchers information when needed.”
The EIRH research team that presented was part of a Patient-Centered Outcomes Research Institute (PCORI) award focusing on “Creating Capacity for Sustainable Partnerships with Patients and Families in Research.” It explored how patient and family advisory councils could innovatively and effectively partner with researchers and healthcare professionals in all stages of research. In addition to Essentia, other presenters included Stanford University in California, North Carolina’s Vidant Medical Center and Ohio State’s Wexner Medical Center.
Riese, who also traveled to New York, will also serve on the new Super Council. The Barnes, Wis., resident is a breast cancer survivor who has served on the Oncology Patient & Family Advisory Council since 2011. Riese was a caregiver for her husband for 24 months after his cancer diagnosis. He died of esophageal cancer. “First and foremost, I have to give Essentia credit for asking the questions and putting resources behind listening to caregivers and patients. I feel like, from day one, Essentia has been listening,” Riese says.
Her hopes for the Super Council are high. “There are many aspects about the Super Council to be excited about and I’m eager to see how it will evolve,” Riese says. She sees the promise of patients and caregivers being able to communicate anytime, from any place at their own convenience from their own device.
“The Super Council is not just about connecting patients and caregivers to the research process, but also about raising and responding more quickly and robustly to other non-research patient and family issues,” she says.
“The Super Council will allow for patients to be engaged in research from design to dissemination of information,” Roseth says. “The Super Council does demonstrate the values of Essentia and the vision of a healthcare system being ‘Here with you.’ Patients at the IPFCC conference expressed their thoughts related to their health care, they conveyed the message to the researchers and providers, ‘Nothing about me without me.’ The Super Council will leverage technology that will ensure that issues of disparities and demographics are bridged giving a voice to patients at levels never yet seen by Essentia through existing patient and family feedback and planning processes. The patient voice and their perspective of their care must be considered for Essentia to realize its goals and mission. The Super Council will support that mission.”