Heather Earley used to lug a 5-inch binder to every pediatrician’s appointment, filled with hundreds of pages of specialists’ notes, test results, and other medical records for her 11-year-old son, who was born with a rare genetic disorder.
Now Early, 47, a mother of three from Libertyville, Ill., just brings her iPad. Two months ago, Earley transferred all her son’s information to an app that stores the medical records.
“It was exactly what we needed,” Earley said. “All that paperwork was so cumbersome and complicated, and this is so simplistic and easy to use.”
While Americans have embraced wearable health devices that keep track of the minutiae of daily fitness routines and diets, they’ve been slower to trust online storage of their mental health records, mammogram reports, and prescriptions. Google Health — an online record-keeping site launched in 2008 — was discontinued in 2012 after far fewer people than expected registered to enter and store their medical data on the site.
Privacy concerns might be part of the hesitation.
‘We want to enable them to follow along and participate in their health care.’
“Any photos patients take of their medical records and store on their phone or computer could be susceptible to data breaches,” said Gautam Hans, a lawyer who works on health privacy issues at the Center for Democracy & Technology.
But a new generation of apps and websites developed to be compatible with electronic health records in doctor’s offices — which are encrypted and protected by federal privacy laws — could lead more consumers to carry their medical charts in their mobile devices.
Apple announced earlier this month that it will offer a new health app in its iOS 8 set to launch this fall. The company says the app will enable patients to easily transfer electronic health records — imaging tests, immunization records, and medication history — from one doctor’s office to another using their iPhones or iPads.
Medicare patients, military veterans, and soldiers on active duty can already access their digital records by means of the federal government’s Blue Button initiative. More than 100,000 of those patients have downloaded the iBlueButton app since it was launched two years ago. The app lets patients access and securely transmit their test results and medical history to any health care provider they visit directly from their mobile devices.
A growing number of doctors have also begun to use electronic health records systems that synch with some consumer apps. More than 40,000 physicians use Dr. Chrono to store their patient records electronically, handle medical billing, and send out automatic appointment reminders. The system pairs with an app called OnPatient that gives patients mobile access to their health records and allows them to fill out medical forms on their tablets or phones.
Electronic personal health records are “beginning to be truly useful because they’re easier to use than in the past and focused on real world needs,” said Dave deBronkart, a patient activist from who started the popular health blog e-Patient Dave after being diagnosed with advanced stage cancer. When a new specialist, for example, asks which antibiotics a patient is allergic to or wants details about a previous surgery, the answers can be quickly accessed on a smart phone.
Only a small percentage of Americans — typically those who are sick or caring for small children — maintain a “personal health record.” Such a record, typically compiled by a patient, can include information on cancer screenings, immunizations, previous hospitalizations, and a list of current medications, as well as the status of chronic health conditions such as high blood pressure. But consumer health advocates are hoping online tools will encourage most people to establish such a record to facilitate better doctor-patient interaction and lead to improved health.
“Patients need to be able to accurately answer questions that are asked of them, and having a personal health record can help them do that,” said Julie Wolter, an associate professor of health science at St. Louis University who teaches courses on keeping personal health records. Patients won’t struggle to recall which antibiotic they’re allergic to, for example, or which pain medication worked to ease their chronic migraines a decade ago. They can also avoid duplicate tests or unnecessary procedures if they find themselves seeing multiple specialists to manage various health conditions.
Patients keeping their own records might also lead to a reduction in the nation’s health care costs. A 2008 Harvard Medical School analysis found that if 80 percent of the US population could access and share their medical records with any doctor, it could save up to $29 billion a year in medical expenses by reducing toxic drug interactions and unnecessary imaging tests, as well as saving administration costs such as time spent getting a complete medical history.
Patients would also have the opportunity to catch and fix glaring errors they find in their records. “Two-thirds of all medical records contain at least one mistake and many of them are significant,” said deBronkart.
In 2009 when deBronkart had the chance to review his own charts — uploaded to Google Health from his primary care doctor at Beth Israel Deaconness Medical Center — he was surprised to see how many errors it contained: a false medication warning, exaggerated diagnoses, and conditions he’d never had. Many of the mistakes were due to the transmission of insurance billing codes, rather than the doctor’s diagnostic notes.
For this reason, any data downloaded from Medicare or other health insurance sites needs to be carefully checked for accuracy, said Bradley Crotty, an investigator in clinical informatics at Beth Israel Deaconess Medical Center. He works with the hospital’s PatientSite Web portal that lets patients see and download their full medical chart including physician notes.
“We’d like patients to catch errors,” which can also include human mistakes like entering the wrong dosage or medication name in a chart, Crotty said. “But mainly we want to enable them to follow along and participate in their health care instead of trying to remember everything from a visit.”
Primary care patients seeing physicians at the hospital were the first to access the portal, but Beth Israel Deaconess is now implementing the program hospital wide. Patients can download certain things from their records, such as their list of medical conditions, medications they’re taking, and any allergies and upload them directly to HealthVault, a cloud storage service run by Microsoft.
While there’s no way to fully guarantee that hackers will never gain access to personal health records stored online or on apps, medical information shared directly with a patient from a doctor’s office or hospital must meet the security and privacy provisions of the federal Health Insurance Portability and Accountability Act. “Identifying information should be removed from the data — like a patient’s name, address, and phone number,” Hans said. “It doesn’t immunize someone from a data breach, but it minimizes the repercussions.”
Records that are entered into apps by patients themselves, however, don’t have such personal data redacted.
Maayan Cohen, CEO of Hello Doctor, said the app’s password protection features make the data secure, but Hans said records uploaded by a patient are not as secure as those downloaded from a doctor’s office onto other apps like iBlueButton that must comply fully with the HIPAA privacy rules.
globe.com. Follow her on Twitter @debkotz2.