Free our health records: the public outcry for access to health data
What if a million patients asked for their health records all at once? What if a “day of action” around medical records access were to take place, as proposed by some advocates? Would the Electronic Health Record system, fragmented into its myriad doctor-centered and hospital-centered silos, crash? And beyond that – how would it work, exactly? Where would people store their records (safely)? Would they need to go to each and every one of their doctors and hospitals and request their records, and somehow hope to blend them into some unified form that made sense? Can anyone do this?
Electronic Health Records (EHR) systems are built to facilitate provider-oriented workflows in doctors’ offices and hospitals. They are built around documentation, not collaboration. When the federal EHR Incentive Program (Meaningful Use) required that EHRs be able to share records with each other, the result was somewhat of a bolt-on set of functions. EHRs had to build a standardized type of message (Continuity of Care Documents and consolidated clinical summaries, which are XML documents), and be able to send them from one system to another (sometimes through a secure email-like system called Direct, if more connected methods were not available). Often, in reality however, clinical summaries around referrals and transitions of care drop to paper and are faxed.
Patient access to their records is a separate effort when it comes to the design of EHR systems. Often sold as a separate package to EHR users, patient portals are the main way people gain insight into their clinical records. In integrated delivery networks, where everyone is on the same system, a single portal can show critical information on everything within that system. The result is satisfying (“I can get all my Kaiser records in one place!”) – but even there, people move into and out of such a system over their lifetime, or sometimes use services (such as emergency services) outside the network.
Most people, however, get their healthcare from multiple places, and each place may use a different EHR system, some with good patient portals and some not. And each place requires a separate login to retrieve that segment of health information found there.
Is there any universal place where data from all these separate silos can be gathered, merged, and displayed in a meaningful way? Can we have a universal patient-centered longitudinal health record that is yours to keep, and take with you when your healthcare plan and delivery network changes? Something that is continuously fed and connected to the EHR systems of each of your doctors and hospitals, so that you control access, and everyone on your care team sees and interacts with the same universal data?
This may seem pie-in-the-sky, but it is actually a vision of the next generation of health IT. Can we get there from here? Current EHR systems are not built to do this. We should not expect them to.
A universal health data platform
In order to achieve the goal of connecting everything together into a single place where patients, doctors, and the whole care team can work from the same data, we need to build the platform. By necessity, it will be outside the realm of EHRs, though it interacts closely with them. For providers who use EHRs as their primary tool in day-to-day work, this platform must function as an extension of their current capabilities. For patients, it is the unified place to get one’s data – after all, logging in to multiple patient portals simply doesn’t work.
Flow Health has built that platform. The next step is pulling data into it. The platform Flow Health has created is populated by a variety of feeds – from data requests to EHR systems (CCDs and clinical summaries as the main content at first), to hospital and emergency department Admission/Discharge/Transfer (ADT) notifications, to claims data where available, to patient-entered data on check-in for an office visit, to Chronic Care Management nurses interacting with patients and helping build patient care plans. The list goes on.
Once this data is blended together, then rendering that data into meaningful experiences makes it useful. Flow Health has created a provider-facing app that allows all care team members to see a feed of posts about patients and review patient timelines (in addition to direct secure messaging between peers). We have also created a patient Check-In app that replaces in-office clipboards, is pre-populated by already-known data, and helps build consent and gather direct data. In addition, Flow Health has created a patient-facing app that allows patients to see their blended data in one place, manage their care teams, communicate with their care providers, and take that information with them wherever they go, even after changing health plans, doctors or hospitals.
Further, to remove barriers to adoption, Flow Health has made these apps free to everyone.
Take the pledge
Collecting clinical data into a single, usable platform is not just a “nice to have.” It is essential for improving the quality of healthcare delivered in this country. Improving communication and information-sharing can reduce patient injuries from medical errors by 30 percent. This is staggering, given that as many as 440,000 people die in hospitals each year as the result of preventable medical errors, according to the Journal of Patient Safety.
It is important to start building this centralized data now. Take the pledge, go to www.freeourhealthrecords.com and do your part to help make this happen.
Patients: Request your records. When you visit your doctor, ask them if they are using the Flow Health Check-In app. If not, ask them to do so. From there, you can identify your care team and automatically request your records from them. From the Flow Health patient app, you can do the same thing. You don’t even need to go in to the doctor’s office to do this!
Doctors and hospitals: When you receive a records request, respond to it promptly. We have created easy, step-by-step ways to generate a clinical document from all the Meaningful Use-certified EHRs, and upload it easily into the platform, through a secure web connection. There is no excuse for not responding to a data request. In fact, the HIPAA Final Rule from 2013 requires that a physician using an EHR deliver an electronic version of patient data promptly upon request. We have made this process easy. No paper, no faxes – just a few clicks, and you’re done. From any EHR.
So, circling back to the original question – what if a million patients requested their records all at once? Where would they put it? How can they digest the information and use it in ways that matter? Flow Health has the solution – we have built the platform that can facilitate this. We welcome a “day of action.”