(Story updated at 7 p.m. ET.)
Sen. Lamar Alexander (R-Tenn.), chairman of the Senate Health, Education, Labor and Pensions Committee, on Wednesday called for a delay and a phased-in implementation of Stage 3 of the electronic health-records program.
“I believe we should delay until Jan. 1, 2017, making of the final rules for Stage 3 of the federal government’s program to require doctors and hospitals to create electronic health-record systems,” Alexander said, adding specificity to a call for a Stage 3 delay he made back in July.
Alexander also added, “I believe then that the Stage 3 requirements should be phased in at a rate that reflects how successfully the program is being implemented. I believe also that the modified rules already proposed for Stage 2 of this program should be adopted immediately because it will help most doctors and hospitals comply with the government’s requirements.”
He added that about a quarter of a million physicians and about 200 hospitals face Medicare penalties if the current Stage 2 rules are not revised. Only about 12% of physicians and 40% of hospitals have been able to comply thus far, he said.
“That's why we should adopt immediately” the Stage 2 modifications, Alexander said.
“Our goal is to help patients and it does not help them to do this fast and wrong,” he added.
The Senate HELP committee's hearing, its fifth this year, focused on what the government can do to facilitate patient engagement.
Three witnesses—two of them cancer patients and one an IT safety researcher—said there is great, but largely untapped potential in sharing of information between patient and clinicians.
Physician participation in the program dropped 12% last year. The drop was, due in part, to steep reductions in the incentive payments designed into the program, coupled with the advent of more stringent Stage 2 rules.
The CMS and ONC released a proposed set of revisions to the Stage 2 rules in April.
Earlier this month, the revisions for Stage 2 were submitted to the Office of Management and Budget along with the final rule for Stage 3.
“CMS intends to finalize a set of requirements that addresses attestation deadlines and reduces the overall reporting burden on providers and provides flexibility for the reporting periods in 2015,” said CMS spokesman Jabril Boykin. “We are anticipating an early fall release.”
Alexander's “strong stance” was welcome news to Robert Tennant, senior policy advisory to the Medical Group Management Association.
“Everybody wants this program to succeed,” Tennant said.
American Medical Association President Dr. Steven Stack said the physicians' group “strongly agrees” with Alexander, “that the meaningful use program should be paused given the urgent need to improve the usability and interoperability of electronic health record systems.”
“Proper reassessment of the program before implementing the final stage of regulations will help avoid problematic software that physicians and patients will be burdened with for years to come,” Stack said.
At the HELP hearing, Kathy Giusti, the founder and executive chairman of the Multiple Myeloma Research Foundation, said she's set up an organization to make data sharing easier for other patients like her.
As a result, “We have tripled the lifespan of patients with this very rare disease because we shared data,” Giusti said. But there's still much work to be done to help patients facilitate access to their records, she said.
“I have six electronic health records,” Giusti said. “I have no central place to integrate them. I can't make it available to my provider or the researchers. The greatest efficiency in our healthcare system is going to come from integrating EHRs,” she said. But the decision to allow their patient information to be aggregated into a research database should remain, “absolutely the decision of the patient,” Giusti said.
Eric Dishman, a self-described “data grabbing patient,” who waged a 23-year fight against a rare form of kidney cancer, is also an Intel fellow and general manager for health and life science for the giant computer chipmaker. Dishman said his was a battle on two fronts, “as much of a fight to get my own data . . . as it was to fight my cancer.”
Dishman would learn that 92% of all the drugs he was put on “were biologically unable to help,” but one did, and now it's been nearly three years since his kidney transplant.
Dishman said patients face several barriers accessing their own information.
Organizations are “hiding behind HIPAA as an excuse for not giving us our data,” he said, even though the 1996 law and subsequent rules give patients a legal right to receive copies of their records.
Providers also lack adequate tools for data sharing and there is a “skeptical, paternalistic attitude” held by providers about who ought to see medical records. Finally, Dishman said, everyone from providers to research organization and technology vendors “are all hoarding patient data to try and monetize it for them,” referring to the practice of charging for data.
“Patients should not have to become practically hackers to access their data,” while others profit from it, he said.
But patient access to records alone is not enough, it has to be meaningful and presented in a way that patients can understand it, said Raj Ratwani, scientific director of the National Center for Human Factors in Healthcare at Washington, D.C.-based MedStar Health.
Ratwani said the usability of the current crop of electronic health records system is “sub par,” even though the federal government has required developers to test and certify them for usability to qualify in the EHR incentive payment program.
PHRs, which are typically an extension of the EHR, have no such testing requirement, he said, so “They've not been designed to meet patients' needs,” he said.