The Internet and the easy accessibility of information online, is already transforming diabetes self-management. Vibrant online communities of people with diabetes are actively sharing information and experiences. But few diabetes educators are even aware of the collective information resource developed by the diabetes online community. Even fewer diabetes educators are working with these active and proactive patients to enhance their diabetes self-management.
|Deborah Greenwood, RN, BC-ADM, CDE
"With the recent modification to the National Standards for Diabetes Self-Management Education and the focus on diabetes self-management support, there is a huge emphasis on providing ongoing support," said Deborah Greenwood, RN, BC-ADM, CDE, diabetes program coordinator and clinical nurse specialist at Sutter Medical Foundation in Sacramento, Calif.
Greenwood and Perry Gee, MSN, RN, CPEHR, dean of continuing studies at Simpson University in Redding, Calif., will present a breakout session on "The ePatient Revolution, Personal Health Records and Diabetes Self-Management on Wednesday, Aug. 7.
"The evolution of technology and the increasingly savvy users of technology, referred to as e-patients, are already engaged in social media. We are looking at ways diabetes educators and these communities can collaborate using technology to generate a collective wisdom," said Greenwood, a doctoral candidate in the inaugural cohort of the nursing science and health leadership program at the Betty Irene Moore School of Nursing at the University of California, Davis. Her research program, shared with Gee, who is a fellow doctoral candidate, is investigating how CDEs can work with e-patients to support diabetes self-management and support to achieve better clinical outcomes.
|Perry Gee, MSN, RN, CPEHR
"Nurses and other health care providers generate data, information, knowledge and wisdom for patients," Gee said. "Diabetes online communities have developed their own knowledge and wisdom. What if we could each tap into those two domains and develop a shared or collective wisdom? We need to collaborate with patients and start to change the ways we do our work."
That change has already begun. In February, JAMA Internal Medicine
published a longitudinal survey of hypoglycemic events conducted by members of TuDiabetes.org, an online diabetes community, and researchers at Boston Children's Hospital. Participants were recruited online through the TuDiabetes.org network and data were collected using a smart phone app. Participant engagement was extremely high, with 96.6 percent of respondents accepting follow up contacts to obtain additional research data.
"This is the very early stage of collaborating with e-patients," Gee said. "Not a lot of work has been done in this area. We want to start the conversation among diabetes educators and start to explore what this relationship with e-patients could be. We want to help diabetes educators get comfortable with the idea that we can and should be looking at this online community as educators in any other active community and figuring out the most effective ways to support self-management education and support."
Shared access to personal health data is an essential part of working with e-patients, Greenwood noted. Like other educators in large health care settings, she can access patient health records as needed. E-patients and educators need similar access to the same types of personal health information.
"We will talk about personal health records and informatics, how we want to look at collaborating directly with e-patients and how to build on collaboration," she said. "Change can be difficult, but change is something we need to do in order to work effectively and collaboratively with e-patients and the diabetes online community. We all have some work to do."