Even though I am a health care consultant concerned with health information management and the transition to the Electronic Health Record. I am also a consumer of health care. I was born with a cleft palate. I have since found out that I probably have a condition called Sticklers syndrome. Once this diagnosis was tossed around and landed in my medical record it has caused some concern with obtaining life insurance at a reasonable rate. Now as of today, I have one physician that has uses this term repeatedly and none of my other physicians that I go to even know what it is. This is very frustrating for me especially since I have a career in health information technology. I checked with some of the agencies out there that capture rare disease information and they report that there are 4 cases in the United States that have Sticklers syndrome. I know this is not accurate because since my diagnosis of this condition my own daughter of 23 has been diagnosed with it. I have already myself found numerous cases with the Stickler foundation where I reviewed some of their cases. What a discrepancy with our reporting system? We have some real issues with how things are recorded and reported in the US and so I am excited to see that this issue might finally be addressed and corrected with utilizing an Electronic Health Record EHR) and thus by reporting to patient registries for quality improvement, public reporting, etc.
The second category of engaging patients and families is long overdue. I think if I have read correctly that the committee is wanting to:
• Provide patients with an electronic copy of or electronic access to clinical information per patient preference
• Provide access to patient specific educational resources
• Provide clinical summaries for patients for each encounter
I think that education is the key here. The American Health Information Management Association (AHIMA) has taken an active role in trying to educate consumers and empower them to take more responsibility for their health care information. More needs to be done in this area. Here again I go back to my own personal experience. I have to track my health information so that I can ensure that I receive good quality care. I believe everyone should have access to their personal health information at all times. I really feel that each physician should give the patient a summary of his/her condition after each encounter. This doesn’t have to be in paper format. It could be sent to a flash drive and every patient would have one with their personal health information on it. Of course training would need to be done on how to use a flash drive. (Believe me there are a lot of people who do not even know about them or how they work) The flash drives today are becoming more sophisticated and technically secure. A person can purchase one with password protections, or biometrics. I feel very secure using a flash drive to carry my information to and from my doctor’s appointments. As a consultant, I am also very involved with training the health care providers about the importance of sharing information with their patients. I am also involved with training different health support groups on how to approach their providers when they need information. Training is the key here.
I hope this gave some insight to my thoughts on the term meaningful use. When you look at the term meaningful use one really has to ask themselves who is the end user. Who is the consumer of this information? To me the answer is -we all are.
To find out more on how I am involved please go to my website. http://www.healthcaretracker.org