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Patients Frustrated By Lack Of Health Data Access

Posted on January 3, 2017 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

A new survey by Surescripts has concluded that patients are unhappy with their access to their healthcare data, and that they’d like to see the way in which their data is stored and shared change substantially.  Due to Surescripts’ focus on medication information management, many of the questions focus on meds, but the responses clearly reflect broader trends in health data sharing.

According to the 2016 Connected Care and the Patient Experience report, which drew on a survey of 1,000 Americans, most patients believe that their medical information should be stored electronically and shared in one central location. This, of course, flies in the face of current industry interoperability models, which largely focus on uniting countless distributed information sources.

Ninety-eight percent of respondents said that they felt that someone should have complete access to their medical records, though they don’t seem to have specified whom they’d prefer to play this role. They’re so concerned about having a complete medical record that 58% have attempted to compile their own medical history, Surescripts found.

Part of the reason they’re eager to see someone have full access to their health records is that it would make their care more efficient. For example, 93% said they felt doctors would save time if their patients’ medication history was in one location.

They’re also sick of retelling stories that could be found easily in a complete medical record, which is not too surprising given that they spend an average of 8 minutes on paperwork plus 8 minutes verbally sharing their medical history per doctor’s visit. To put this in perspective, 54% said that that renewing a driver’s license takes less work, 37% said opening a bank account was easier, and 32% said applying for a marriage license was simpler.

The respondents seemed very aware that improved data access would protect them, as well. Nine out of ten patients felt that their doctor would be less likely to prescribe the wrong medication if they had a more complete set of information. In fact, 90% of respondents said that they felt their lives could be endangered if their doctors don’t have access to their complete medication history.

Meanwhile, patients also seem more willing than ever to share their medical history. Researchers found that 77% will share physical information, 69% will share insurance information and 51% mental health information. I don’t have a comparable set of numbers to back this up, but my guess is that these are much higher levels than we’ve seen in the past.

On a separate note, the study noted that 52% of patients expect doctors to offer remote visits, and 36% believe that most doctor’s appointments will be remote in the next 10 years. Clearly, patients are demanding not just data access, but convenience.

Patients Benefit From Access To EHR Data

Posted on April 8, 2013 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

While doctors may not be completely comfortable with granting patients access to their EHR data, new evidence suggests that doing so produces significant benefits.  A new study published in the Journal of Medical Internet Research has concluded that granting patients such access “overwhelmingly” yields positive results, according to a report in FierceEMR.

To track the benefits of patient data access, researchers studied the My HealtheVet EHR pilot program, which gave access to the initial PHR established by VA. The pilot recruited 7,464 patients at nine VA facilities between 2000 and 2010.  An enrolled patient completing in-person identity proofing could access clinic notes, hospital discharge notes, problem lists, vital signs, medications, allergies, appointments, and laboratory and imaging test results. They could also as enter personal health data, access educational content and authorize others to access the PHR for them.

To evaluate the impact of the pilot, researchers from within and outside of the VA conducted focus group interviews at the Portland, Ore.-based VA Medical Center, which had 72 percent of pilot enrollees.

In discussing the program with patients, researchers found that they did have some negative experiences, such as reading uncomplimentary or offensive language in notes, concerns with inconsistencies in content and some technical problems with the EHR, FierceEMR reports. On the other hand, having access to their data improved patients’ communication with clinicians, coordination of care and follow-through on key items such as abnormal test results, the study found.

That being said, there are some repercussions to offering this access, researchers found. Though having access to notes and test results seems to empower patients, increase their  knowledge and improve self-care, it does have an impact on how physicians practice. “While shared records may or may not impact overall clinic workload, it is likely to change providers’ work, necessitating new types of skills to communicate and partner with patients,” the authors said.

Who Owns Patient Data?

Posted on September 26, 2011 I Written By

Priya Ramachandran is a Maryland based freelance writer. In a former life, she wrote software code and managed Sarbanes Oxley related audits for IT departments. She now enjoys writing about healthcare, science and technology.

Recently, on The Healthcare Blog, there was a really interesting post by Dr. Marya Silberberg about why patient lab data should be liberated. She recommends lab results be sent to patients at the same time that they’re sent to doctors. Dr. Silberberg does an admirable job of looking at the patient data issue from both sides. From the patient’s perspective, it is really not that hard to understand. If you’ve ever transferred your (paper) records from one doctor to another, or you’ve spent a month or more waiting for your doctor’s office to call you with their interpretation of lab test results, you’ve known the pain. It’s your data, about your body, your health, and you really have no way to access it if you have something of a grinch gatekeeping the records at your doctor’s office.

I’m no doctor, but I get you too. There are way too many paranoid, entitled people in the world, and chances are they’re your patients. Handing patients their lab records is the best way to make sure your office is inundated with callers demanding to talk to the doctor right now, and many of them will just be non-emergency calls.

Having said that, I wasn’t a huge fan of commenter Dr Mike’s response to the post:

“If I ordered the test, the results should be returned to me first, if you ordered the test, the results can come to you. So go order your own lab tests and then you won’t have to wait for me to get through that mountain of paper on my desk. Not sure your insurer will want to play along as you play doctor though

Part of the problem is that patients don’t understand that I am not on retainer for them. In the good ol’ days the docs cared for their friends and neighbor’s and community, and had a personal and financial interest in each individual. But today I don’t have a contract with you, I have one with your insurer, and together the two of us have pretty much locked you out of the decision process, and you have allowed this to happen.”

 

Whoa, them’s fighting words. Patient data access doesn’t have to be an adversarial experience. If you, the doctor, are spending an inordinate amount of time explaining lab results to patients, it’s only fair you be compensated for your consultancy in some way. And you, the patient, must stop thinking of access to patient data as a zero-cost right you can exercise. A tiered insurance plan offering could very well take care of phone-consultancy and patient-lab-reporting costs. If I or a loved one had a condition that required me to look over lab reports and such, I would happily pay a few dollars extra a month for that privilege. And for all the concerns about how the average user can’t understand what the lab results say, it’s surely not impossible in this day and age that lab reports sent to non-medical recipients be in human readable form.

Check out the post here.