Of course, there are small and large vendors out there who can help. And some health insurers and employers also offer assistance through consortium groups like Dossia. However, a lot that information is derived from claims data, which doesn't always provide a complete picture of the patient either. Sometimes, the data suggests that blood work was done, for instance, but in fact it was ordered and paid for, but no results exist in the file.
Under the HITECH Act and HIPAA regulations, clinicians are supposed to offer patient copies or electronic access to their medical data, which could be used to populate a PHR. But for the most part, that's being achieved through patient portals. And while portals can be convenient for patients, unless the individual gets all his or her care from one affiliated group of providers--like a Kaiser Permanente, for example--it's still unlikely that the patient information will be complete.
So, what are patients to do if they want to create and manage their own complete e-health record? Too often it requires they supplement information already available in PDFs or images of scanned documents with a mish mash of assorted information from paper records. That scattered collection of information then has to be manually entered into the e-PHR. That's a lot of work. And if the patient is elderly or suffers from a serious illness that's driving him or her to gather all the information in one place, it may be too much.
[ Which healthcare organizations came out ahead in the IW500 competition? See 10 Healthcare IT Innovators: InformationWeek 500.]
One option is to use the services of a company like Zweena, a tiny Princeton, N.J.-based vendor offering a concierge service that manually tracks down paper-based medical records and inputs key data from those documents into an understandable and manageable digital record.
Over the last five years, Zweena's small staff, which includes a nurse and medical coding expert, has created digitized healthcare records for about 450 individuals by combing through more than 3,500 pages of medical documents. With the patient's signed authorization, their team sends requests for medical records to the individual's doctors. When the patient's records come in, they "abstract critical information" and enter that data into a new digital record.
The service ranges in price from $50 a year for a basic membership to $495 a year for an "unlimited, premium" plan, that gives members "unfettered access to Zweena staff." With the premium service, Zweena nurses will answer questions about what a medical term in a record means, or they'll have records printed out and mailed for someone who's traveling.
Zweena also has a relationship with Microsoft so that patients' Zweena records can be "pushed" into Microsoft HealthVault personal health records, "in case" individuals are uneasy about dealing with a small company like Zweena, said founder John Phelan.
Eventually, Zweena wants to allow bi-directional transfers of information between HealthVault and Zweena PHRs, so that patients can easily have digitized data updated into Zweena as more doctors agree to send patient electronic data to HealthVault and other consumer PHR platforms, said Phelan.
"There's an evolution going on," Phelan pointed out. "Google Health's model didn't work because they were focused on getting millions of eyeballs" for their PHR site, he said. "But it's really about putting the patient at the center of their information," and making it easy.
Find out how health IT leaders are dealing with the industry's pain points, from allowing unfettered patient data access to sharing electronic records. Also in the new, all-digital issue of InformationWeek Healthcare: There needs to be better e-communication between technologists and clinicians. Download the issue now. (Free registration required.)