Vacationing in exotic Morocco, you fall and break your arm on one of the shady streets of Casablanca's Old Quarter. Speaking neither French nor Arabic, you are desperate to inform the doctors at the nearest hospital that you are diabetic and due for insulin any minute, along with concerns about your allergies to several common medications and materials such as penicillin and latex.
The attending physician has nothing to go on but your passport and an Internet connection -- and that's more than enough. Before prescribing or treating you, she pulls up a medical dossier that contains all pertinent information, including a calendar of necessary treatments and all the medication you've ever taken.
You get the insulin you need, the doctor wears nitrile gloves and your X-ray and a clinical note in French are uploaded to your file when you are finished. Your doctor back home gets an email about the change, and you meet for a follow-up when you return. That's the promise of personal health records (PHRs), and proponents say cloud computing could help make them a reality.
Major players in the IT industry, spurred along by the attempted healthcare reform measures in the United States and the growth of cloud computing, are attempting to find a place within the health records business. The challenges, however, are severe.
Collin Evanspresident and CEO, Dossia
"It's a lifelong, personal, private, portable record of health," said Collin Evans, president and CEO of Dossia, an employer consortium pushing hard for PHRs. Dossia is made up of large employers that want to liberate and consolidate individual patients' medical records from the mess of unconnected systems that currently house them. Dossia is just one of several major PHR initiatives; computing giants Google and Microsoft are also piloting programs.
Evans said that currently in the US, both clinical and financial medical records are tucked away in every corner. Doctor's offices and hospitals have clinical records; pharmacies have dispensary records; insurance providers have records of services, procedures submitted for payment, lists of service providers and outcomes on file. The patients, however, despite their rudimentary legal rights to do so, can't see all of their information in one place.
"The HIPAA (Health Insurance Portability and Accountability Act) very clearly states the individual's right to get a copy of his health record," said Evans. It doesn't say, however, how accessible those records should be or where patients can get them, he added. Insurance providers have developed Web portals to supply various kinds of information services and hospitals can provide clinical records on request, but the information isn't readily accessible by a new doctor or new insurer.
This means that a trip to an unfamiliar hospital or healthcare provider can result in both the doctor and the patient being less than fully informed. The doctor has to quiz the patient on his or her past and proceed with utmost caution in case he forgot to ask about an allergy or previous complications. It may even mean providers at different locations but within your own insurance network won't have access to your history.
"People know more about the FedEx package at their door than the hospital knows about the patient who shows up [for emergency treatment]," said Evans. The byzantine network of insurers, service providers, payment networks and so on are all working in isolation.
"Even a modest [doctor's] office in a small town is dealing with dozens of companies," he said. Patients don't see the complexity and can't make informed decisions about their healthcare as a consequence.
Supporters of PHRs compare them to online banking or online shopping. Almost every bank now offers the ability to track all aspects of your financial life via a Web portal; supporters of PHRs feel that health records should be as accessible.
"We're early on in the adoption," said Dr. Kenneth Mandl, director of the Intelligent Health Laboratory at the Children's Hospital Informatics Program (CHIP) in Boston. A steep uphill battle awaits PHR providers, he said. Mandl is the co-founder and developer of CHIP's Indivo personal heath record project, which he calls a platform for health information applications.
Security and confidentiality of patient data
Mandl sees two major obstacles in the way of considerable PHRs usage. The first is the development of "really robust trust models" that, in addition to reassuring users, would enable security and confidentiality as patient data travels among hundreds of hospitals and insurers.
Getting someone else's clinical records mixed in with your own could be catastrophic, perhaps even worse than leaving records out. Users will need confidence that won't happen before they'll want to try PHRs. "Solve the trust issue and I think we'll see adoption pick up rapidly," said Mandl.
"Number two: we need to see more data liquidity," Mandl added. That means clarifying standards about data in the health care industry. According to some experts, there are almost as many ways to structure electronic clinical and patient data as there are hospitals. Even setting rudimentary standards for how this data is organized and presented will be a tough challenge, said Mandl.
"Patients have a set of beliefs that reflect a greater level of understanding than actually exists," said Mandl. The reality is that every hospital and every clinic has scattered and disconnected piles of records, and no single entity -- be it care providers or insurance providers -- can pull it all together for a given patient.
Health informatics a mess
"What nobody wants the patient to understand is that nobody manages their healthcare [information] at all," said Mark Brownlee, associate vice president of insurance, healthcare, and life sciences at IT services provider Infosys. Compared to other industries, Brownlee said, the state of disarray in health informatics is shocking.
He compared it to the days of personalized car makers. Each car was well-made but took months and large sums of money to produce. Automation stripped away some of the charm but produced better cars faster. The automobile industry learned about process management by collecting and analyzing data, something that's almost impossible to do in healthcare today.
Regulation means that doctors have reasons to digitize records, but the electronic healthcare records systems use wildly varying ways to format and process data and, as a result, cash-strapped hospitals go with the cheapest options. They focus on reimbursement rather than the clinical data that could help patients, doctors and researchers actually improve healthcare.
Hospitals can't do basic comparative research on treatment effectiveness, for example, without old-fashioned research and planning. By comparison, a manufacturer can analyze production data in seconds and adjust workflow accordingly. A hospital can't figure out whether using aspirin after a heart surgery is helpful or not without a years worth of work, said Brownlee.
"There is no such thing as a clinical data repository (CDR)," said Brownlee. "Even when you talk to the marquee names in the healthcare industry, you'll be surprised to find they don't have a CDR."
A CDR would have data on aspirin, for example, already stored and ready for analysis. Providers and insurers only focused on billing data, he said, and while they include records of tests and procedures, they do not contain results.
The informatics problem must be addressed, Brownlee said, if the healthcare industry is to modernize and start reducing costs by bettering business practices. Medical technology is literally space-age, but costs are astonishingly disproportionate to effect. According to a McKinsey report in 2007, the US spends around $650 billion more per year on healthcare costs than comparable countries, even after adjusting for the relative size of the US economy.
Fixing the problems in healthcare informatics will probably require a governmental mandate, Brownlee said, although he sees great potential in the commercial ventures by Microsoft and Google. He added that the advent of cloud computing and the explosion of cheap information services made the time ripe for PHRs.
Public perception of public health records is lacking
Besides the haphazard nature of medical records, another major challenge facing PHRs is one of public perception. In the world of commerce, users are startled when they can't get ready access to statistics, ratings, reviews, tracking information for anything from a toaster oven to a tractor. Consumers of healthcare, however, don't want or don't know how to use this kind of information.
Health insurance provider Cigna, for instance, has a sophisticated online portal for users that offers a mostly ignored batch of health records. According to Joe Mondy, assistant vice president for IT communications at Cigna, the vast majority of the site's six million subscribers use it to compare drug prices and doctors. Mondy said the site gets about one million hits a month from users looking for doctors and a thousand or so who access their online records.
"Frankly, that's a de minimis minority," said Mondy. He said the site was designed around getting users relevant information; he hypothesized about a subscriber suffering from wrist pain. The user would type "my wrist hurts," and the portal would show possible causes, display local doctors or specialists and even offer an online consultation.
Interest in managing the details of records and billing histories just isn't there, said Mondy. Although he sees no major obstacles to what supporters envision for PHRs, "the technology is there, the sociology is not."
Proponents of PHRs say that this has to change. When it does, they claim it will reshape the face of healthcare. Employer-backed groups such as Dossia want individual PHRs to give them leverage against insurance companies. Researchers and hospitals see a potential to drastically improve care and cut costs with better analysis and more accurate diagnoses.
Before PHRs can become common practice, however, patients have to understand and appreciate them. And that may be a while off.
Carl Brooks is the former Technology Writer for SearchCloudComputing.
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