DSMA Live ‘Rents: After Thoughts Dr. Joyce Lee Nov 5 ’12
Lorraine and I had a wonderful conversation with Dr. Joyce Lee, pediatric endo., head of diabetes at MyGlu.org and mom of a child with a chronic condition. Listen Here. You can also listen in iTunes. Please consider rating DSMALive in iTunes. We would love the feedback.
We highlighted a few things from the diabetes news before speaking with our guest. November is so filled with diabetes events it was a struggle to comment on just two. Lorraine chose @AbbyBayer’s Photo-a-Day challenge encouraging ‘talking’ about diabetes where a picture is worth a thousand words – social media photos. SixUntilMe has more on the post #NDAMphotoaday. Bennet spoke about a recent study that shares the good news that diabetes mortality has declined in the decades since the late 60s and wondered, ‘How do we keep empowering that kind of success?’
Research is one path to that success and coincidentally that is exactly what our guest is all about. Joyce joked that she was destined to become a pediatrician. It is her family business with a parent and a sibling both being physicians. She loves kids and became interested in diabetes in her education rotations and those focused her career. While she is a specialist, she says she is not a diabetes expert. She sees a patient 20 minute,s 4 times a year, they live with type 1 24/7/365. We explored that distinction and how Glu fits into the picture with her. Here is a short introductory video of both Joyce and Glu.
We talked about how seeing the patient as an expert empowers them and flipping around the typical patient physician relationship.
We explored MyGlu.org as a means of connecting patients and research to find and share successful ways of living with type 1 diabetes. MyGlu.org is a HIPAA compliant addition to the DOC that in part seeks to connect the peer-to-peer patient community with other parts of the larger diabetes community. Glu is one part of the larger T1D Exchange that includes research and a bio bank. Here a presentation that details those parts of the T1D Exchange:
The research goals of Glu are to use new media as a way to accelerate research timeframes, give more accessible access to research and have the community help define how research can help T1Ds. Joyce mentioned academic peer review and said that Glu is a means of bringing in patients and patient discussion into that review process. I see Glu as an opportunity for us, the patient community, to move closer to and bring our expertise as people who live with type 1 to a relationship of participation with researches that is more one of researchers’ colleagues of than disinterested subjects of studies.
Glu’s first research project is on emotional support and the challenges of T1D. The survey is drawn from Bill Polonsky’s work. In full disclosure, Bennet participated a small amount with communication ideas but all real brilliance was the result of Bill, Joyce and others.
We talked about participating with research. Glu certainly is a step to help build a closer relationship between research and people with diabetes, including parents. Some careful communication to keep kids safe in participating will be needed before kids studies happen there, but we can expect that will be coming. Participation in research requires informed consent. People with diabetes and parents of kids with diabetes need to understand the research and process clearly before participating.
Glu U at the bottom of the MyGlu.org page is where people can find research. The support and diabetes study will only be up a little longer. Act now. Beyond Glu, people interested in becoming more involved with studies can search for diabetes studies at http://www.clinicaltrials.gov.
Our conversation on research was intended to help people understand that research is a critical part of the process of better care. That good communication of better is an important part of the evolution of lower health complications. Joyce along with being a diabetes specialist is an expert in allergies – that is she has kids living with serious food allergies. We spoke about the following video she created with her son to help communicate his health issues with his school.
I think this is a brilliant piece of health communication. Certainly the community has similar communication needs as part of our progress to more successfully living with diabetes.