When Kelly Shanahan had her OB-GYN practice in South Lake Tahoe, Calif., she was meticulous about providing medical records promptly to all patients who requested them, she said.
But since being diagnosed with metastatic breast cancer in 2013, an event that forced her into retirement, Shanahan has discovered that not all of her doctors are as attentive to such requests.
Getting copies of her records has been, as she puts it, 鈥渁 colossal pain.鈥�
With few exceptions, federal law requires that health care providers make copies of medical records available within 30 days after patients request them and, when possible, in the format they desire. Under California law, providers have to hand over the records if they are being sent directly to the patient.
But many patients, who may have records scattered across doctors鈥� offices, labs, hospitals and clinics, say responses from health care providers can range from sluggish to churlish. Assembling the records can be onerous.
Earlier this year, Shanahan turned to a Silicon Valley startup called , which requests medical records on behalf of cancer patients and redacts them for clarity and legibility.
Shanahan logged on to the company鈥檚 website and signed an electronic consent form, handing over to Ciitizen the task of requesting her records from multiple providers. The company emails her when a record is ready for her to view.
Ciitizen does not charge patients for gathering their medical information. Rather, it hopes to make money 鈥渋n the near future鈥� by taking a transaction fee for 鈥渕atching third-party researchers with patients who wish to share their records,鈥� said Deven McGraw, Ciitizen鈥檚 chief regulatory officer and former head of health care privacy policy at the U.S. Department of Health and Human Services. She said the company plans to offer its services to people with other serious illnesses in the future.
On Tuesday, Ciitizen, based in Palo Alto, Calif., released an update to a report card it first published in August that uses a five-star system to rate how health care providers comply with federal rules governing record requests. The scorecard, which Ciitizen plans to refresh every few months, can be viewed online at .
It shows that of the 210 providers from whom Ciitizen has requested patient records so far 鈥� including hospitals, doctors and specialty clinics nationwide 鈥� 51% have only one or two stars, meaning they were noncompliant or required significant intervention by the company to comply.
Ciitizen also published a , based on the scores of those 210 providers plus telephone surveys of nearly 3,000 health care institutions, that found that more than half of providers were out of compliance with federal patient data access rules.
That is in line with a by Yale University researchers last year showing that many top U.S. hospitals were not in compliance with patient records rules.
鈥淐ancer patients do not have the time or energy to make two to three phone calls and argue with their providers,鈥� McGraw said. 鈥淲e did a lot of arguing. We encountered so many roadblocks.鈥�
In a , Seema Verma, administrator of the Centers for Medicare & Medicaid Services, called the Ciitizen scorecard 鈥渁 powerful tool for patients鈥� that 鈥渨ill hopefully spur competition amongst providers to make patient data more readily accessible.鈥�
Lois Richardson, vice president and legal counsel of the California Hospital Association, said the scorecard is too new to assess whether its findings are significant or just a collection of anecdotes based on a small number of records requests. 鈥淚t could be either; I just cannot tell,鈥� she said.
Some consumer advocates say enforcement of laws governing medical records accessibility is ineffectual.
鈥淭here have never been any cops who will go around and bust a hospital for failing to produce the data,鈥� said Dave deBronkart, a pioneer of the patient access movement.
DeBronkart, 69, beat the odds after doctors gave him 24 weeks to live following a diagnosis of metastatic kidney cancer 12 years ago. Along the way, he has butted heads with the medical establishment over his health records.
When he was invited to speak at a medical conference in Toronto in 2009, the organizers asked him the title of his speech. He replied: 鈥淛ust call it 鈥楪ive Me My Damn Data.鈥欌��
That phrase quickly became a rallying cry, a , a meme, a coffee cup, a , and even a rap: 鈥�Give me my damn data/鈥檆ause it鈥檚 my life to save/give me my damn data /just like e-patient Dave.鈥�
DeBronkart and others in the medical data access movement applaud Ciitizen鈥檚 report card but believe the real game changer will be a new federal rule that could eventually allow patients to see their medical data on their cellphones as easily as they can see their bank accounts.
鈥淲hat we have been striving for is starting to happen,鈥� deBronkart said. 鈥淔or the first time in 10 years of advocating for patient access to our medical information, I am excited and optimistic.鈥�
The new rule is expected to begin rolling out in 2020, a CMS spokeswoman said. It will require health care providers doing business with Medicare and Medicaid, and in the federally run Affordable Care Act marketplaces, to share their patients鈥� data through apps that are compatible with an international standard for sharing health care information known as FHIR (Fast Healthcare Interoperability Resources).
Unlike current federal law governing records access, the new rule will have some teeth, federal officials say. Just how it will be enforced is still being hammered out, but it will likely entail financial penalties.
Some patient advocates worry about consumers鈥� privacy when their medical data is shared so widely online. 鈥淥f course we want consumers to be more empowered, but it does seem like we鈥檙e rushing into this idea,鈥� said Dena Mendelsohn, a senior attorney in the San Francisco office of Consumer Reports, adding that there are not yet laws in place to protect patient privacy.
But Shanahan, the breast cancer patient and former OB-GYN, said it should be her decision.
鈥淚鈥檓 the patient,鈥� she said. 鈥淚鈥檓 saying, share my freakin鈥� information.鈥�
This story was produced by聽, which publishes聽, an editorially independent service of the聽.