Balancing Patient Privacy with Coordinated Care


New tools to enable the storing and exchange of electronic health records are making care coordination easier to achieve.  Combined with payment reform, new models such as Patient Centered Medical Home are emerging.  However, patient privacy laws complicate the sharing of records between providers.  Of specific concern is the form of patient consent which is being required in certain jurisdictions before physicians can access prior records over a health information exchange (HIE).

 States with an “opt out” model provide notice to patients at the time of care that their records will be accessible to authorized physicians they visit in the future.  While patients can ask not to participate, the vast majority (in the high 90% range) stay in the system.  States with an “opt in” model require the HIE to obtain patient signatures on participation forms beforehand.  Participation rates in such states are vastly lower, although they do grow over time as the work of signing up patients is conducted.

 ACLU suit against Rhode Island HIE shows why privacy is so central to health IT – FierceHealthIT

The state of Maryland is now considering which model to follow.  The decision will be made by the Maryland Health Care Commission (MHCC), advised by a Policy Board of patient advocates.  I urge the Commission to adopt an “opt out” model, for the benefit of Maryland patients.  Physicians will only incorporate record queries into their workflow if there is a reasonable chance of finding useful data, and only an opt out approach will provide the critical mass necessary to drive physician participation.  While patient privacy must safeguarded through policies and audits, and certain sensitive information such as substance abuse history should be excluded from the opt out policy, in this case the benefit of more quickly enabling coordinated care for Maryland patients warrants an opt out policy for the state.

 For more information on HIE and the MHCC, see:


3 Responses to “Balancing Patient Privacy with Coordinated Care”

  1. drah2010 Says:

    One of the goals of the HITECH Act (part of the 2009 American Recovery & Reinvestment Act) is to ultimately promote the use of a National Health Information Network that will allow patient information to flow through the health care delivery system, similar to what happens with financial data today. But how can we get to the point of a longitudinal, lifelong health record, when there’s no national guidelines on basics like the patient consent model. Rather than allowing individual states to decide on an opt-in or opt-out model, the feds should draw the line. Otherwise, the flow of information can be unnaturally hindered in places where state lines are naturally “obeyed” in care-seeking. In the Washington, DC metro area for instance, a person may live in VA, work in MD, and use doctors in DC, VA & MD. Different consent laws in these three jurisdictions could lead to an administrative nightmare for physicians, gaps in patient records, and confusion on the part of patients themselves. The HHS Office of the National Coordinator, Policy Committee, needs to step up & address this issue as HIEs expand as a result of federal funding.

  2. drah2010 Says:

    I meant, “Otherwise the flow of information can be unnaturally hindered in places where state lines are NOT naturally ‘obeyed’…”

  3. davidhorrocks Says:

    Drah2010, I agree wholeheartedly with your assessment that individual state rules are complicating exchange. The situation is bad for patients, whose care will be less coordinated, bad for healthcare providers, who have multiple regulatory regimes to which they must adhere if they are near a state boarder, and bad for payers, who ultimately fund efforts to deal with the messy regulations.

    The commerce clause would seem to apply in this case, giving the federal government authority to impose a common framework, as they did previously with HIPAA. The Office of the National Coordinator for Health IT (ONC) would be the obvious group to address the matter.

    Stakeholders who must be won over include state delegations who tend to be wary of federal intervention, whatever its form. The scope of ONC’s mandate on this front should be well defined so as to win them over. Likewise, states such as New York and Massachusetts, who err on the side of patient privacy, might resist federal preemption which will likely be more balanced.

    Lastly, I believe ONC is legitimately concerned that federally imposed solutions could limit innovation in this nascent field. The effort to standardize should be focused narrowly and contain provisions for exemption in the event of future and uncontemplated technology development.

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