Portal Usage is not a true measure of consumer demand for personal health data.
I just had my mammogram today. During registration I asked about how to access the patient portal. The woman at the registration desk wasn’t sure about how that worked. Another woman behind the desk came over and explained, verbally, how I could request access from the hospital’s website. I had to ask a bunch of questions to clarify enough specifics to actually make her explanation useful. She then explained that diagnostic reports are not available on the portal because diagnostic test result information can only be obtained from the ordering physician.
I agreed with the rational that it is better to have a diagnostic result explained by the physician before it is posted to the portal, but after that, why couldn’t the report be posted to my portal then? She didn’t know. She said it was the rule. Then, she opened up and explained that she had signed up for the portal to track a health issue she was facing and also was surprised to find that diagnostic reports could not be posted there. I started to explain why it was important for a person to be able to get and keep those reports in their own PHR. She agreed. So did the other woman who was checking me in. So did another woman who was in the waiting room and happens to be a member of the Janie Appleseed Network. She joined the conversation and added that she also has been having trouble getting the information she wants to track out of the patient portal.
Policy makers, vendors, standards development organizations, and many, many people involved in health IT (information technology) cite statistics showing low use of patient portals as proof that consumers don’t want access to their health information. An article about the EHR (electronic health record) incentive program titled “Patient Portals Still Struggling To Engage Users” (http://histalkmobile.com/patient-portals-still-struggling-to-engage-users/) explains that CMS published statistics on patient portal engagement across rural and secondary hospitals. The numbers reveal that portal use has been abysmal. The article reports, “Meaningful Use Stage 1 mandated that all hospitals and practices provide patients with the ability to view, download, and transmit a patient-friendly copy of their electronic medical record, within four days of being treated. The results were promising on the surface, but the catch is that any hospital that had zero patients attempt to access their portal was excluded from the performance metric. In total, this exclusion applied to 2,472 hospitals, representing 66 percent of all US hospitals. 66 percent of US hospitals had zero patients attempt to access their portal.”
Based on my experience and countless encounters with consumers, like the four of us today, the truth is just the opposite. Consumers do want access to their health information. The problem is that patient portals are difficult to access and the information available doesn’t meet consumers’ needs. That’s the real reason portal use is low.
It’s time to develop a better measure of consumer demand for health information!
If you want to be counted as a consumer who cares to get access to your personal health information, join the Janie Appleseed Network. Your membership counts. It validates the theory that consumers do want their health data. We’ll help equip you with the skills you need to get and keep your personal health data.