Consumer Preferences

The Office of the National Coordinator for Health Information Technology released a draft document for public comment on October 5th (Draft Consumer Preferences Requirements Document.) Some of the concepts brought up by that document are the subject of this post. The HITSP Consumer Preferences Tiger Team spent a considerable amount of time reviewing the document and formulating comments earlier this month. I'm sure a lot more will be said in the future. Expect the issue of Consumer Preferences to be addressed by both the HIT Policy and HIT Standards Committees. Eventually, multiple stakeholders must contribute to a strategic framework to address this topic from the health IT perspective.

The first thing to recognize is that the implementation of consumer preferences will involve policy issues as well as technological capabilities. Conflicting federal, state, and local rules and regulations cloud the related policy considerations. Trying to harmonize these disparate approaches can be a real headache. Also, under HIPAA state laws take precedence over federal regulations, if they are stricter. With sharing of health information projected to occur across multiple state boundaries in the near future, lawmakers may need to consider instituting overarching federal rules. The reason is that when policies differ significantly from one jurisdiction to another it is impossible to assure consumers that their preferences will be honored. This significantly erodes consumer trust. We all recognize that trust is essential to the stewardship of confidential personal health information. The policy challenge here will involve assertion of at least a minimal set of policies that will ensure enforcement of consumer choices from one jurisdiction to another. The technical challenge will be the need to tag discrete data elements within declared consumer preferences and ensure that the linkage remains intact as data flows between the various systems that may access that data. Mechanisms will need to be developed to reconcile different versions of a consumer's preferences so that only the most up-to-date are utilized.

A dictionary of data elements will also be needed with standard terms or at least enough information to allow mapping of data types/content between organizations. It is amazing how many terms can be used to classify consumer preferences. For example, there are various shades of meaning between the common words-consent, informed consent, authorization, preference, directive, consent for information release, etc.

There are other issues to resolve. Among those that might be included are: authentication of users, authorization for information access based on location of user, user role, context of information use, timing of information access, and more. There will be different rules for clinician access, administrative uses, health care operations, and secondary uses including research, quality reporting, and possible commercial uses of information by third parties. The latter is an especially sensitive issue for consumers. A closely related area is the sequestration of information in health records. Consumers want to control the release of their personal health information concerning sensitive issues such as alcohol abuse, HIV/AIDS status, mental health conditions, physical abuse, health issues of minors, sexually transmitted disease information, genetic history, and more. They want control to preserve privacy and prevent discriminatory practices that may occur despite legislation forbidding discrimination concerning a variety of health conditions. Clinicians are concerned that vital information may be hidden from them that could adversely affect patient care and increase the risk of medical liability claims. Health insurers are concerned that health conditions could be concealed by applicants that would adversely affect their underwriting process. Finally, some sensitive conditions have a number of associated data elements that could make it difficult to manage privacy directives. An allergy or drug could easily be an indicator for a sensitive diagnosis/condition for example.

The final topic I want to address in this post is the difficulty of acquiring consumer preferences. No standard format is currently utilized. The more discrete the choices offered, the longer it takes to record these choices. How will preferences that conflict be reconciled? Health care organizations have an obligation to educate consumers about their available preferences. This can be a time-consuming process that could tax the health care delivery resources of a practice or organization. Is it fair to place the responsibility for all this education on providers? The Agency for Health Care Research and Quality (AHRQ) has a toolkit to help clinical researchers with these tasks. The site has valuable information for all involved in the area of informed consent. The technology to collect consumer preferences is not mature. Additional standards need to be developed and rigorously tested. How granular should consumer preferences be? How do we apply the opt-in vs. the opt-out approach? We know there is a large disparity between choices made with one approach compared to the other. This is rapidly evolving area in health information technology. There are many vocal, concerned stakeholders. It will be interesting to be involved in future developments in this area.