As patients, we want better access to our medical device data, correct? At this very moment, as you read this post, we have a unique opportunity to lobby the government to make patient access to this data a requirement! Please read on and consider participating...
Technology expert and type 1 colleague Anna McCollister-Slipp, who's based in Washington D.C. and acts a patient representative on a number of FDA committees, including their Advisory Committee on medical device data, has prepared a brief with a call to action for all of us to submit comments to the Office of the National Coordinator for Health IT (ONC) on the so-called "Meaningful Use Stage 3 Criteria" by mid-January 2014. She explains:
"Those of us with diabetes use an array of medical devices to manage our care. Each generates electronic data, which when viewed in aggregate over time provides valuable insights into the efficacy of our treatment regimen, as well as critical patterns that affect our health. Without this data, we must rely on static measures from tests performed during physician/lab visits, which while helpful do not provide the level of insight gained from blood glucose levels, continuous glucose monitors, scales or home blood pressure monitors. Incorporating this data into our care is critical!"
"Right now, government officials are determining whether or not to require makers of electronic health record systems (EHRs), who are receiving millions of dollars of government incentive payments, to enable you to upload your medical device data into your physician's electronic health records, beginning in 2016. Not many in the diabetes community are aware of this opportunity."
In my own words, the deal is this:
In order to force physicians out of the paper-based era and into electronic systems, several government agencies have been rolling out a multi-year "Meaningful Use" (of data) plan in three stages. Providers get incentive payments when they meet the requirements, and are penalized with Medicare/Medicaid reimbursement reductions when they don't.
The reason this should matter to you is that Stage 3 requirements are being determined now, and this is the point at which patients are finally being granted access to clinical EHRs (!). A super-important element is deciding whether patient-generated data from medical devices must be incorporated into these records. Yes! We want that!
As Anna points out: if we don't jump on this opportunity now, it may be many, many years before we ever see diabetes device data made accessible and shareable (and meaningful) to patients!
How to let ONC know this needs to happen:
Write a letter and/or email addressed to:
National Coordinator, Office of the National Coordinator for HIT
US Department of Health and Human Services
200 Independence Avenue S.W.
Washington, D.C. 20201
Please include your name and contact information, so the validity of your comments is verifiable, if needed. You can email your letter directly to Anna at: firstname.lastname@example.org
Points to emphasize in your letter:
• This is important to you as a patient, parent of patient, caregiver or health care provider (or all three!)
• We need this to enable better patient care and improve patient/physician communication and coordination.
• This is critical if we hope to improve patient outcomes over the long-term, which will help prevent the development of diabetes complications and lower health care costs.
• Recording data from physician visits and lab values alone does not capture all of the important data that is critical to understanding and treating diabetes. Without this data, good care is thwarted and any retrospective analysis of data is of limited value.
• The government is spending a lot of money to improve care. Without device data, the value of EHR data for chronic disease management is limited.
btw, it looks like we have an ally already in National Coordinator for Health IT Farzad Mostashari. According to Wonkblog he recently said, "Right now, we're spending trillions on health care and 99.9999% doesn't contribute anything to medical knowledge. That's the real vision, that we actually take routine care, the health care happening in the real world, and have that contribute to knowledge."
Anna will be compiling letters and emails from patients and advocates and forwarding them directly to Mr. Mostashari and other key staff people at ONC/HHS.
And for those of you who have political connections, it never hurts to contact your congressman and ask them to weigh in on the issue on your behalf.
Let's make sure they hear from the Diabetes World loudly and clearly, yes?!