Dead on Arrival: Centralized Health Information Exchanges
Long Live Health Information Exchange of One
All the rationale for Health Information Exchanges (HIEs) makes sense — after all, who would argue with the idea that data sharing can improve care? A centralized HIE would allow emergency room doctors to call up a patient’s complete medical history, saving precious minutes. It would cut costs by avoiding duplicate tests when patients change doctors or hospitals. Public health researchers would obtain data to detect the spread of diseases quickly, potentially saving thousands of lives.
Over time, however, many HIEs have collapsed, unable to make their business models work. HIEs fail because of funding issues. HIEs struggle because patient record matching is difficult. HIEs are a struggle because of patient authentication and privacy issues. Getting vendors and providers to break down the walls and share data? That’s a challenge. Many of them are not thrilled about sharing data with their competitors, particularly when they compete in dense urban areas with a hospital on every block.
On the provider side, money is certainly a sticking point for many hospitals asked to pay six-figure annual fees to participate in the exchange. Big medical centers have already invested heavily in their own IT systems. They question the wisdom of plunking down more money on an electronic platform of uncertain value to them when they just spent a boatload of money upgrading their systems for Meaningful Use certification.
And then there are technical limitations with interoperability. To add, there are territorial and participation issues, particularly with getting smaller providers on board
So, while HIEs might have been a glorious idea, many HIEs crashed before takeoff.
Even though there are plenty of threats to HIE sustainability, and there is little capacity in the system today to support information exchange across doctors, hospitals and post-acute care settings (such as rehabilitation hospitals and skilled nursing facilities), the original vision of HIEs is still a necessity.
If better patient care is the goal of all stakeholders, the key is how the vision of HIEs is implemented. The answer certainly does not lie in building centralized HIEs. That has been tried. It is clear that it has failed and its sustainability is questionable. Not to mention, centralized databases create a patient honeypot for fraudsters and the patients don’t even know how vulnerable they are. Centralized healthcare databases containing information about millions of patients need to be scaled down immensely; scaled down to the point where they become Health Information Exchange of One.
So what will it take to develop an environment in which information sharing actually thrives?
First, Electronic Health Record (EHR) vendors must adopt and incorporate a standardized patient data set that will allow healthcare organizations to ensure that patient records can be shared and understood in a common format. This will let physicians access a full medical history before determining the most appropriate treatment for patients. A uniform patient matching data set will decrease medical errors and improve the overall quality of health information.
No matter how elegant an individual clinic’s or hospitals’ or health system’s electronic health record solution might be, the value of the patient data these systems capture is significantly diminished if it cannot be reliably shared with those who need to see it and use it. The ray of sunshine here is that Meaningful Use Stage 3 will move us closer to this.
Meaningful Use mandates are great, but consumers and patients must actively engage in accessing and using their personal health information, and demand that their providers do the same. It starts with aggregating all patient data around each person, and then this individual being able to download a copy of all her data held in EHR systems on her phone or portal using APIs. Additionally, giving them the ability to store this data on their phones and extensible to a secure, cloud-based account of the individual’s choice. All information residing in such an account must be private and secure, and under the control of the patient.
Should the patient wish to change his or her account to another cloud-account provider, it must be further mandated that he or she is free to do so and that all cloud-based account providers can easily exchange all of the patients data from one cloud provider to another.
As the patient travels from one clinic, hospital, health system or agency to another, he or she grants access to the cloud-based account holding his or her records and allows the new entity to transmit or aggregate newly generated health data back into the account.
In effect, we have created an HIE of One.
Next, at the federal/national level, legislation must be written to clarify the ownership of medical records. We’ve all encountered issues with our medical records. Whether getting a copy for a second opinion, finding major mistakes, or changing health care providers, our access to this important set of data has been fraught with difficulties. We are at the mercy of a system where our medical records are the property of hospitals, doctors, and health systems. Except in New Hampshire, where ownership rights are assigned to the patient, no other states recognize the individual’s right of control and ownership of their medical data. Ownership cannot vary from state to state; it must be mandated at the federal level.
The HIE of One, can actually achieve something that works as a national or global solution for health information exchange. It puts the patient at the center, where he or she ought to be. It makes information available from anywhere to anywhere it is needed so long as there is a connection with the internet. It doesn’t require perfect, bidirectional connectivity between and among the thousands of different electronic systems in healthcare, but what is required is a single, standardized connection between any of those systems and the patient’s phone.
The HIE was a good idea, but it’s never been given a real chance to fly, and now its moment has passed. The centralized HIE is dead, long live the HIE of One.
