Christine Brouwer Hinman of Ithaca saw the need for electronic health records when she found herself keeping pages of notes on her young daughter’s complex cancer care.
Mira was diagnosed with brain cancer in 2006 and died at the age of four in 2008. She received specialty care at hospitals in Syracuse, Rochester and New York City, had 14 surgeries and underwent multiple rounds of chemotherapy and saw her primary care physician in Ithaca as well as speech, occupational and physical therapists.
Hinman became the link between her daughter’s health care providers and hundreds of the youngster’s medical records located around the state. She carried around Mira’s medical images on CDs that recorded the youngster’s illness, kept track of all of her daughter’s medical files and after each medical visit recorded any changes in her daughter’s medication.
The difficulty families and patients have connecting the disparate parts of medical care in New York is gradually diminishing with an emerging system of electronic medical record exchanges.
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Today, New York State has 10 regional health information exchanges, each of which allows electronic health records to be quickly and securely transferred online among participating healthcare providers in a given set of counties.
By mid 2015, all 10 exchanges in New York are expected to be connected to each other. They will comprise the Statewide Health Information Network of New York, which will be one of the largest health information exchanges in the country.
For patients, the expected benefits of electronic health information exchange include:
• Smoother transitions of care from one provider to another because providers will have ready access to patient records.
• Faster, more accurate diagnosis and fewer duplicated diagnostic tests.
• Fewer hospital admissions of patients in emergency rooms.
• Prevention of potentially fatal drug reactions because physicians will be able to see what other medications a patient may be taking.
• Accessibility of patient data during natural disasters;
• Improved tracking of public health data to spot public health trends and threats.
The linking of the regional exchanges will be especially helpful for patients with complex diseases like Mira’s, who must often seek specialty care outside their own region.
“Having to both update that information ourselves and just make sure that it was accessible – you know it’s just not a simple thing to do,” Hinman said. “It’s a lot of work when you’re already very busy managing an illness.”
Once when Mira seemed to be doing well, the family packed their bags for a vacation in Florida and left the records behind. But instead of playing in the sunshine, Mira wound up in the pediatric ward of a hospital in Tampa, where her mom spent an hour and a half trying to detail her full medical history to the attending physician. The attending looked at Mira’s mom and asked, “Are you a doctor?”
“You’re recounting surgeries, interventions, chemotherapies and their reaction to all of that,” Mira’s mom said. “Having that information shared through a database alleviates a lot of that necessity for parents to become unlicensed physicians,” she said.
The linking of New York’s medical information exchanges will help residents who experience emergencies while traveling within the state. It is also expected to be particularly helpful for patients who live near the boundary between two regions, and for college students and other individuals who move back and forth between different parts of the state during the year.
How exchanges work
Southern Tier counties are now split between three health information exchanges. The exchanges include:
• Southern Tier Healthlink covers Broome, Tioga, Chenango, Delaware, and parts of Otsego counties and is based in Binghamton.
• HealtheConnection covers 11 counties in central New York including Tompkins, Cortland and Cayuga counties and is based in Syracuse.
• Rochester Regional Health Information Organization covers 13 counties in the Southern Tier and western New York including Chemung, Schuyler, Seneca and Steuben counties.
To understand how a health information exchange works, picture a big octopus. At least, that’s the suggestion of Christina Galanis, executive director of Southern Tier Healthlink in Binghamton.
“It’s got all these legs, tentacles,” said Galanis, “there can be 100.”
Each “tentacle” dips into a different electronic health record system, which could be at a hospital, laboratory, doctor’s office, or even a dentist’s office. The tentacles are pathways for sending and receiving data, but not all the electronic health record systems speak the same technical language. So when necessary, “the octopus brain cell is basically doing the translation,” Galanis said.
Offices that are connected to the exchange may submit data, receive it, or both. The information in the exchange is backed up in multiple locations. Among other things, it includes lab results, medications, diagnoses, medical imaging reports, and in some exchanges, actual medical images.
The regional exchanges are non-profit organizations that were founded by groups of local stakeholders — such as hospitals, medical societies, insurers, and employers, with only limited start-up funds from the state and federal governments.
United Health Services and Our Lady of Lourdes in Binghamton provided much of the initial funding for Southern Tier Healthlink. The motivation was to save money in the long run and improve patient care, Galanis said.
The statewide network was formally conceived only after the regional exchanges had already gotten off the ground. A public-private partnership, it’s coordinated by the New York State Department of Health and the New York eHealth Collaborative, a non-profit organization that receives government grants.
Help for patients
As part of the network, the regional exchanges are charged with providing “a sort of portfolio of services,” explained Ted Kremer, executive director of Rochester Regional Health Information Organization, which covers 13 counties, including Chemung, Steuben and Schuyler. Thanks to public funding, these required services are provided free of charge.
One of these services is direct messaging, a kind of hyper-secure, encrypted email system for sending selected records from one provider to another more quickly and securely than can be done by fax or mail.
Another is patient record query, which provides access to all the records in the exchange that belong to an individual patient. A provider must have the patient’s consent to use this service except in a life-threatening emergency. The records can be imported to the provider’s electronic health records system or viewed through an online portal.
At the physician offices of United Health Services in the Greater Binghamton area, the regional exchange is queried each night to update the records of patients who will be seen the next day, according to Dr. Afzal ur Rehman, the Chief Medical Information Officer of UHS. The patient record query service is also used on a daily basis to look up the records of patients who come to the emergency room at UHS’s Wilson Medical Center in Johnson City, said Cindy Pulling, the lead scribe there.
“All offices, all hospitals, any healthcare facility should have it because it makes life a lot easier,” Pulling said.
If a patient arrives unable to speak due to trauma, stroke or heart attack, a scribe can access their medical history through the exchange as long as the patient hasn’t explicitly denied the hospital access before, Pulling said. And even when most of a patient’s information is in the hospital’s own medical records system, scribes frequently prefer to use the exchange because it makes the information easier to collect and digest.
In 2012, Pulling’s own father, who had cancer, landed in the emergency at Wilson with a bad infection after having gone in and out of another local hospital repeatedly. With his permission, the scribe was able to pull up everything he’d had done. “We didn’t have to go through all the lab work and waiting,” Pulling said. Within about 20 minutes, the doctor had diagnosed the infection and had a chest tube put in, she said. Access to the exchange probably cut her father’s time in the emergency room to about one quarter of what it would have been otherwise, she said.
Privacy safeguards
Doctors can also sign up through the exchange to be alerted whenever one of their patients is admitted to an emergency room or hospital or discharged from a hospital. And each exchange either offers or will soon offer a patient portal, so patients can access their own records and communicate with their providers. That could be especially helpful for patients who don’t have family to watch over them and lack the time or energy to keep track of everything they’ve been through, Mira Brouwer’s mom observed. “It’s a great way to help people make accurate and better decisions,” she said.
The technology used by the regional exchanges is similar to that of online banking, which means the systems are secure, but not absolutely impenetrable. Many patients worry about whether their information might be stolen if they give providers access to it, Cindy Pulling has noticed. But she is convinced that whatever risk exists is minimal and well worth the benefits.
Besides, not giving a provider access to your data won’t necessarily protect it from hackers. If you visit a lab or care provider that has records automatically submitted to the exchange, your data will automatically be submitted too, so it can be used without your name for public health purposes and kept available in case you want it to be accessed in the future.
The system keeps a record of every person who has viewed each patient’s information. If a provider checks a patient’s records without their explicit consent, an audit is done to make sure the access was necessary to avert a life-threatening crisis. If it turns out it wasn’t, the provider loses their access privileges.
So far, more than 90 percent of hospitals and more than 85 percent of federally qualified health centers in the state have joined regional exchanges, said David Whitlinger, the Executive Director of New York eHealth Collaborative. The percentages of private practice physicians participating vary widely, from around 10 percent to 70 percent, he said. But usage of the exchanges is quickly increasing.
For example, HealtheConnections was accessed about 6,000 times in September of 2013 and 9,000 times this past September. Southern Tier Healthlink has connected to 51 percent of outpatient physician practices in its service area, and in the region surrounding Rochester, about 77 percent of the entire patient population has consented to have at least one provider access their data through the regional exchange.
The regional exchanges already work really well for 90 some odd percent of the patients whose data is in them, said Christina Galanis of Southern Tier Healthlink. By stitching them all together, she said, “we’re trying to address that last mile.”
Regional health information exchanges
• Southern Tier Healthlink. Covers Broome, Tioga, Chenango, Delaware, and parts of Otsego counties. Location: 45 Lewis St., Binghamton. Website: www.sthlny.com
• HealtheConnection. Covers 11 counties in central New York including Tompkins, Cortland and Cauyga counties. Location: 109 S. Warren St., Suite 200, State Tower Building, Syracuse. Website: www.healtheconnections.org
• Rochester Regional Health Information Organization. Covers 13 counties in the Southern Tier and western New York including Chemung, Schuyler, Seneca and Steuben counties. Location: 200 Canal View Blvd., Suite 200, Rochester. Website:www.grrhio.org
Glossary
Electronic Health/Medical Records. Digital records have replaced the paper records that providers traditionally used. The electronic records contain information including laboratory test results, pharmacy data, radiology results, surgical procedures, clinic and inpatient notes, preventive care delivery, emergency department visits and billing information.
Health Information Exchange. Health information exchange refers to the sharing of clinical and administrative data across the boundaries of health care institutions and other health data repositories.
Nationwide Health Information Network. The Nationwide Health Information Network is being developed to provide a secure, nationwide, health information exchange that will connect providers, consumers, and others involved in supporting health and healthcare.
Patient Portals. Patient Portals allow patients to see their health information and interact with their care providers. This encourages patients to be proactive regarding their own health and improves their communication with providers.
Date: November 10, 2014