Compromise On Health Data Access May Be Ugly

The government's proposed rule for Meaningful Use Stage 2 and the comment period that ended earlier this week kicked off a battle between patients and providers. At the heart of the war is the Centers for Medicare and Medicaid Services proposal that patient information be available to the individuals within 36 hours of discharge from a hospital and within 24 hours of an office visit.

Understandably, patient and consumer rights groups want individuals able to access their medical information as soon as possible so they can act on it swiftly, while healthcare providers want more time to gather data and make it available to patients. Providers fear they'll be forced to rush complex data to patients before it's complete, accurate, and secure.

On the provider end of the battlefield is the American Hospital Association, which says 36 hours is not enough time to provide discharged patients with information about their hospital stay. The proposed CMS requirement is technically "unfeasible" and riddled with potential conflicts with current HIPAA privacy and security regulations, says the AHA. The AHA has requested CMS to modify its proposed rule and give hospitals 30 days to make information available to patients upon discharge.

[ Read More Patient Data Risks, Lawsuits Predicted In 2012. ]

The AHA says it's not possible for hospitals to gather and deliver the proposed patient information within 36 hours. That information includes:

--Admittance and discharge date and location.

--Reason for hospitalization.

--Names of care providers during hospitalization.

--Problem list maintained by the hospital on the patient, verified to be up-to-date.

--Relevant past diagnoses known by the hospital.

--Medication list maintained by the hospital on the patient, both current admission and historical, and verified to be up-to-date.

--Medication allergy list maintained by the hospital on the patient, both current admission and historical, and verified to be up-to-date.

--Vital signs at discharge.

--Laboratory test results that are available at time of discharge.

--Care transition summary and plan for next care provider for transitions other than home.

-- Discharge instructions for patient.

-- Demographics maintained by hospital on gender, race, ethnicity, date of birth, preferred language, and smoking status.

In addition, the CMS proposal requires all of this information to be available for patients to: 1) view online; 2) download, in both a "human readable form" and coded to the specific vocabulary, document, and other standards adopted by the Office of National Coordinator for Health IT; and 3) request that the hospital transmit it to them.

"Thirty days are necessary to make determinations about how to respond to a request no matter the format of the protected health information," said the AHA in its comments to CMS.

"While providing an electronic copy of protected health information maintained in an e-health record eventually may be facilitated more easily by technology, the process of determining which records are relevant and appropriate takes the same amount of time as it does for evaluating paper records," wrote the AHA.

In addition to the AHA's complaint, the American Medical Association, which represents physicians, isn't happy with the Stage 2 proposal that at least half of patients be given clinical summaries within 24 hours of an office visit. In its comments, AMA recommends that the turnaround be three business days, and the threshold be only 20% of patients, rather than 50%. The AMA suggested some other tweaks to the rule.

"The measure should also be based on unique patients seen during the EHR reporting period, and not based on every office visit to minimize reporting burdens. In addition, a physician should have the flexibility to include only the information that the physician believes to be relevant for the summary," said AMA in comments submitted to CMS.

"We do not want to turn patient visits into typing sessions where physicians are keying information into the EHR just so they can print a clinical summary after every visit rather than spending time communicating with their patients regarding their care."

The AMA bid to provide clinical summaries to patients three days after an office visit instead of CMS' 24-hour proposal isn't as extreme as AHA's request to release patient info up to a month after discharge from a hospital instead of CMS' 36-hour proposal.

Then again, hospitalizations are generally a lot more complex and generate a lot more data from multiple departments than most doctor office visits.

On the other end of the battle over patient access to info is the Consumer Partnership for eHealth and the Campaign for Better Care. The consumer group represents two dozen patient and consumer advocacy groups, including AARP, National Partnership for Women and Families, and Advocacy for Patients with Chronic Illness. The group advocates patients having access to their information within 24 hours of an office visit and discharge from a hospital.

"We take issue with the proposed timeframes for when the patient's information must become available to the patient, because the proposed approach is not consistent with the patient's workflow during transitions of care, and does not ensure information availability to patients and their caregivers when they need it most and are most motivated to follow through with self-care instructions: immediately following an encounter or admission," wrote the Consumer Partnership for eHealth and the Campaign for Better Care in comments sent to CMS.

The group also makes an important point that should remind AHA of something that will soon pinch the pocketbooks of hospitals: Financial penalties and reduced reimbursements from CMS for care of patients readmitted within 30 days.

"The shorter timeframe [to provide discharged patients with their information] will also help address cost issues, considering the impact patient non-adherence has on readmission and the penalties hospitals will incur for avoidable re-hospitalizations starting in October 2012," wrote the consumer group to CMS.

The consumer group is correct, especially about hospitalizations: Patients getting access to discharge instructions and other pertinent information about their hospitalization upon leaving the facility--or soon after--is vital for the transition and continuity of care and self-care.

The AHA's argument to extend the turnaround time to 30 days seems to fly in the face of business logic when you consider the pressure hospitals are under to reduce 30-day readmissions of patients. Once patients leave a hospital, bean counters need to cross their fingers that patients and caregivers will adhere to the instructions they're given by clinicians so that they don't suffer complications and end up returning to the hospital with greatly reduced (or no) reimbursement for the next wave of care.

To be fair, not all hospital leaders are opposed to shorter turnaround times to release patient information.

Ray McKee, CIO at Arkansas Heart Hospital, a 112-bed specialty hospital in Little Rock, Ark., thinks that his organization in most cases could likely comply with the CMS rule. "For us, it shouldn't be a big deal," he said.

However, the caveat for hospitals in general to meet the rule depends on "how accurate chart capture is" and whether communication methods with patients "are safe and secure." Given options, McKee's organization likely would favor providing information via a secure portal, rather than "push" information out to patients. "Communication is dicier" in doing that, he said in an interview with InformationWeek Healthcare.

"The reason this has patient advocates so inflamed is that so many have been told in the past: 'You cannot have your data' or 'it will take 2 weeks and you have to pay per page to get it'—AHA brought back many raw nerves at a time when patients feel they had made progress," said Lindsey Hoggle, managing partner at the health informatics consulting firm Health Project Partners, LLC in Gaithersburg, Md.

"Hospital readmissions are a huge cost to Medicare and hospitals--and much work is being done to correct this," said Hoggle in an email interview with InformationWeek Healthcare. "The goal of digital health data is that whoever appropriately needs access can have it at the right time for the right patient."

"In many hospitals--in the paper world--the discharge notes are not ready for a few days, much less immediately," said Hoggle. "Physicians often would dictate discharge notes well after the patient left. While some clinicians get behind in their notes, to think they will remember anything to say 30 days later is suspect," she said. "Having worked in clinical care, the longer you wait to document care--or any summary--the more difficult it is to remember details."

"Perhaps the hospitals are thinking they would need time to 'move'" or get the data to patients--but again, 30 days is certainly not needed," she said.

I predict that the final rule will be a compromise that won't thrill patients and consumer groups or the healthcare providers. Hospitals--and maybe doctor offices, too--will likely be given more time, perhaps several days, to prepare information before it's released to patients. However, extending the turnaround time to more than two or three days isn't doing anyone, especially patients, any favors in the end.

The 2012 InformationWeek Healthcare IT Priorities Survey finds that grabbing federal incentive dollars and meeting pay-for-performance mandates are the top issues facing IT execs. Find out more in the new, all-digital Time To Deliver issue of InformationWeek Healthcare. (Free registration required.)