Last week we discussed "Meal-Snap" and how to incorporate carbohydrate counting into your diabetes regimen. In the past I discussed the advantages and disadvantages of remote video teleconferencing and patient care. What about internet-based patient portals used by parents of children with diabetes (and other chronic illnesses)? As everyone is acutely aware, the availability of computerized gaming systems, tablets, and smart-phones has revolutionized the manner in which we live in society. Indeed, the healthcare industry is starting to take note and beginning to utilize the various software applications and hardware to take advantage of the new technology wave. Diabetes is one of many chronic diseases of childhood. In a paper by Byczkowski, Munafo, and Britto, "Variation in Use of Internet-Based Patient Portals by Parents of Children with Chronic Disease," published in Archives of Pediatrics and Adolescent Medicine, May 2011, pages 405-411, the authors designed a retrospective observational study to evaluate both the utilization of Internet-based portals among families with chronic illnesses, as well as the characteristics of portal registrants and users.
The data was collected from parents of children with diabetes, juvenile idiopathic arthritis, and Cystic Fibrosis at Cincinnati Children's Hospital Medical Center from September 2003 to February 2008. According to the authors, review of adult literature based on information from Geisinger Health System, Group Health, and Beth Israel Deaconess Medical Center have demonstrated that Internet-based portals are indeed used and appreciated by adult patients. However, there is limited information that has been published in the pediatric literature. In the current study, the authors hypothesized that "most families would obtain a portal account by the end of the study period and that significant disparities would be found with respect to race and insurance status."
What were the results?
- 27.9 percent of families obtained a portal account
- Less than 50 percent of portal registrants used the portal within the first 3 months of registration and 15.9 percent continued to use it.
- Disparity was noted in accessing electronic data by race and insurance data.
- The number of outpatient visits was positively associated with registration and portal use
The results from this study support the concept that "incongruity exists among patients between reported interest in using Electronic Health Records and actual behavior." According to the authors, an important "next step will be to determine barriers to using portals among racial minority and publicly insured families to address disparities regarding to access to such resources."
This study echoes the Diabetes Team at Children's National Medical Center's attempt to implement a diabetes healthcare portal several years ago. In this particular case, we partnered with a software manufacturer who provided the health record portal and a prominent sports team to publicize (and incentivize) both portal registration and continued use. The portal enabled families to download specified blood glucose meters and have the data sent by secure email to our diabetes team for evaluation. Unfortunately, despite the publicity and incentives, the program failed due to the lack of interest in continued use of the portal (a major limitation at the time was that not all blood glucose meters were supported). In addition, despite the current availability of a commercial online portal for insulin pump upload, not all patients take advantage of the opportunity; thus indicating that the interest does not necessarily match the actual implementation. Clearly, if it is difficult to ensure continued use of the portal for families with access, how will we be able to disseminate usage in families that may not have adequate resources to even register for it? One answer might be the development of less expensive tablets that could allow greater access to an online portal; another would allow programs to be modified specifically for smart phone use. As it is clear that we are moving towards a paperless society and ultimately the electronic health record, more research will need to be conducted to make internet-based portals available (and utilized) for all socioeconomic populations.
Published On: May 10, 2011