BOSTON – A health information exchange (HIE) such as the Michigan Health Connect (MHC) has been running smoothly and expanding since its inception in 2009. But one potential hurdle for HIEs in the future could be patient decisions to restrict their data based on potential sensitive content or who would be viewing that information.
At the Institute for Health Technology Transformation (iHT2) Health IT Summit in Boston yesterday, Doug Dietzman, MHC Executive Director, talked to HealthITSecurity.com about how this could be a concern for HIEs going forward.
MHC, a Regional Health Information Organization (RHIO) that facilitates and manages Michigan Health Information Exchange (HIE) services, was formally launched as a charitable non-profit corporation in 2010. For perspectivd, it explains its privacy policies on its website here:
Patients who do not want their medical information to be accessible to authorized health care providers through MHC may choose not to participate. If you choose to opt out, health care providers will not be able to look for your records in MHC. Choosing not to participate means emergency room (ER) doctors will not be able to get information that could help them give you better care or save your life in an emergency.
Dietzman explained that while the tools are there for patient opt in/opt out, what’s not there is technical standards and regulations for dealing with patients who decide they want to participate in an HIE, but with limited data accessibility.
It can be very problematic if a patient places restrictions on items such as cholesterol. Or they say it’s only okay for a certain set of providers to see their information. Technically administering that and ensuring it’s met is extremely difficult. And if you’re trying to solve a medical issue and you want to give the doctors all the context they need, then if there’s a record in which the patient has taken out half of the data, those doctors are no longer going to trust what they’re getting and have to refer to paper records.
Dietzman went on to say that this trend seems to counter the industry’s efforts toward ensuring patients are treated properly while not duplicating services. He asked why HIEs are growing and advancing if they’re also allowing the opportunity for patients to back out and potentially bring the industry back to square one.
It’s not a matter of volume of opt-outs, as he guessed about 2 percent of patients opt out and don’t want their information available. Even considering that 2 percent, there doesn’t seem to be a lot of community concern about HIE from patients since Dietzman said many of the opt-outs are clinicians that don’t want their colleagues seeing their information. However, handing the technical considerations of patients who opt in but want to decide which parts of their data is available to doctors and nurses remains a worry for HIEs.
HIPAA omnibus effects?
Another factor to consider in HIE data privacy is HIPPA changes. The new HIPAA omnibus provisions don’t necessarily affect MHC directly, as Dietzman said that HIPAA omnibus formalizes what it had already been doing. While MHC has many of the same obligations to patients as it did as a covered entity before the new rules came out, it’s the details around reporting requirements that may impact HIEs. Dietzman referenced a recent story in which the Westcoast Children’s Clinic mistakenly sent a fax to the wrong recipient.
Are we in a world where a fax that goes to the wrong place becomes a formal data breach that you have to tell the whole world about? You try to do the right things, but you’re talking about human beings and the process is never going to be perfect. If the hammer is so severe that you can’t do your job, then we’ll see where that goes too. We’ve become much more sensitive as to what a breach is.
Questions and concerns about data breach reporting may impact HIE participation. One of the implications of increased awareness and transparency, according to Dietzman, is that since that reporting would be all over the news, participation in programs such as HIEs may be affected. “We also don’t want to patients to lose faith in what we’re doing [as an HIE],” Dietzman said.