Statewide Health Information Exchange


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Statewide Health Information Exchange

  1. 1. Consumer Choice Draft v1.1 1 Statewide Health Information Exchange Policy Board Discussion Draft - Reviewed Brief Definition: The patient choice policy describes a patient’s choice as to whether or not to make his or her health information available through the HIE. Background and Purpose: The purpose of the patient choice policy is to describe the steps that a person must take to keep personal medical data from being shared through the HIE and what it means when a patient’s health information is included or excluded from the HIE. Responsibility: The HIE and its participating providers will have responsibilities related to patient choice. The HIE will make this policy known through participant outreach and education. Policy: Participation by individuals in the CRISP HIE is governed by an “opt-out policy”. This means that all patients are automatically enrolled in the HIE, and no action needs to be taken for a patient who wants to allow authorized HIE providers to share health information. Patients who do not want their health information available through the HIE must takes steps to opt-out, either through the CRISP website, by completing a paper form that can be obtained from participating providers, or by requesting a paper form by calling a toll-free number. If a patient chooses to opt-out of the HIE, that patient’s health information will not be generally available to providers who ask for it through the HIE Exceptions include the following. Information normally sent to a specific provider by fax, e-mail, or paper that can be routed through the HIE will use the HIE to deliver the information, but only to the provider who requested the results initially. Examples include laboratory test results, radiology reports, and similar clinical studies resulting from specific provider encounters. Information requested by or reportable to public health authorities, available from the HIE, that must be disclosed under applicable law. Information required for treatment of life-threatening injuries or illness (I’m not sure where we stand on “break the glass” provisions, but included this for discussion purposes).The HIE will also maintain basic demographic information necessary to uniquely identify each individual and to record a patient’s opt-in, opt-out history.. A patient who has opted out may opt back into the HIE at any time. When a patient opts-in all of that patient’s historical data, including any not visible during any previous opt-out intervals, will be available through the HIE. Subject: Patient Choice Submission Date:05/10/2010 Implementation Date: TBD Scheduled Review Date: TBD
  2. 2. Consumer Choice Draft v1.1 2 A patient may not opt-out of disclosures required by law to be made by the HIE. Procedure: Participate in HIE 1. No action is needed if a patient wishes to participate in the HIE. Opt-out of HIE 1. A patient can opt-out of the HIE in three ways. a. Patient completes and submits the opt-out form on CRISP’s website. b. Patient obtains a paper form from his or her participating provider and opts out at provider site. c. Patient calls a toll-free number and requests a paper form. CRISP will mail a form to the patient to complete and return to CRISP. 2. CRISP will send a letter to the patient’s home address acknowledging his or her opt-out status. 3. CRISP will ensure no protected health information for that patient is available through the HIE. Opting back into the HIE 1. A patient may revoke his or her opt-out status by completing a form through the CRISP website or by mailing a letter of request. All letters must include the patient’s name, date of birth, sex, address, and original signature. 2. Before opting a patient back in, CRISP will contact the patient with the phone number on file to verify the patient’s identity. 3. The patient will then be opted back into the HIE, and the patient’s health data will be made available through the HIE. 4. CRISP will send a letter to the patient acknowledging his or her revocation of opt-out status. NOTE: Parents or guardians may establish choice status for patients under the age of 18, or for other patients under legal guardianship, by providing proof of guardianship papers (i.e.: birth certificate, legal guardianship papers, etc. The following applies to all CRISP policies described in this document and generally to all policies implemented by CRISP. CRISP reserves the right to amend any policy at any time by posting a copy of the changes on the CRISP website. Any changes will be posted at least ten
  3. 3. Consumer Choice Draft v1.1 3 (10) days before they go into effect. Changes that have a significant effect on a majority of patients will also be publicized through CRISP outreach and education means deemed appropriate by CRISP (ex: distributing materials to patients). At all times, the current policies posted on the CRISP website will be the policies that govern the HIE. These policies in no way create contractual rights between CRISP and any individual or group of individuals. I think this draft does a nice job of defining a reasonable, workable approach to opt-in, opt out methodology. However. I think we also need to address three more questions for a person to be able to make an informed decision about whether to opt-in or opt-out:  What control do patients have over which specific individuals or organizations get to look at their personal data? If the answer is “none”, then we should say so.  What control do patients have over what specific data elements are available through the HIE to various providers or classes of providers? If the answer is “none”, then we should say so.  What constraints can they place on the release of personal data to the HIE by their providers? If the answer is “none”, then we should say so. I think we’re all familiar with issues and examples, such as I don’t want to share by college drug use history with my dentist or my psychiatric history with my podiatrist. Or an adolescent who does not want STD results from a clinic shared with any other provider, regardless of what the parents think about opt-in vs. opt-out. I think we also need to state more explicitly what data will be available to the HIE, who makes those decisions, and to whom a patient must address requests to have specific data excluded. For example, Ray Scott pointed out correctly that Axolotyl can look at HL7 flags on received data that define that data as sensitive or protected, and act accordingly. But what if the data source does not properly flag the data? At its most fundamental level, CRISP is a data mover. To whom CRISP moves data is largely under the control of CRISP. What CRISP moves is partly under the control of CRISP, but more importantly under the control of those organizations that provide data to the Axolotyl edge servers. If the intent is that all medical data be provided to the HIE, then I think we need to say so and think through the implications and technology for patient risk and benefit. If the intent is to give
  4. 4. Consumer Choice Draft v1.1 4 some control to patients at the source where data is or is not made available to edge servers, then we have a technical, educational, and resource assessment to consider. I’m not advocating a particular policy and recognize that there are lots of technical, operational, and resource consuming issues for both individual providers and the HIE, but I don’t think we can limit this policy to just the mechanics of opting out without a clear statement of the risks. We might also want to address the benefits of opting in to balance the discussion.