Questions & Answers for Organizations Considering Adoption
What does "adoption" mean?
Organizations can adopt the tool under
their own names and even customize it, while preserving its standards-based
features. The computer code that supports the Surgeon General's family health
history tool is openly available, without charge or royalty. The code can be
downloaded by organizations and customized to their needs and purposes. This
includes offering the tool under an organization's own brand, without
attribution to the Surgeon General tool. In this way, it is hoped that many
organizations will promote the gathering of family health history and the use of
the new family health history tool
What kinds of organizations might be likely "adopters" of the tool and its code?
Many health plans already provide
web-based portals for their customers, and many of them make their customersâ?™
electronic personal health records securely available on-line. They could offer
their own version of the family health history tool to their customers as part
of their suite of electronic information services. Many health care payers also
provide portals or websites where the tool could be included under their own
brand. Vendors who produce EHR and PHR products could build the tool into their
products, possibly adding custom features. Disease advocacy and patient-support
groups could offer their own versions of the tool, customized to focus on areas
of particular concern. Others including health professional and pharmacy
organizations, physician practices or other providers might wish to adopt and
customize the tool. Adopters may be commercial or non-commercial.
Why might an organization want to become an adopter?
Family health history is part of the
foundation of good primary care. The new tool makes the information easy to
gather, easy to share, and ready for enhanced use in an EHR environment.
Further, family health history is especially important for identifying disease
risk and supporting steps to reduce that risk or look for early disease signs.
All of these represent steps that improve quality of care and potentially reduce
disease and its costs. Finally, as the tool can be customized, different
organizations can offer features that may be especially helpful to a given
population, or that may represent a quality or competitive edge.
In what ways can adopters customize the tool and its code to better serve their particular purposes?
Aside from re-branding the tool under
their own names, adopters might want to add enhanced information-gathering
regarding particular diseases, links to other web-based services like
risk-assessment tools or patient support, and features making the tool more
compatible with the operations of the adopting entity. However, adopters should
avoid suggesting that this tool provides medical advice: it is an information
vehicle to help consumers and health professionals make health care decisions,
not a source of advice.
What obligations does an adopter agree to?
While the tool can be customized, the
core standards used in the tool and the resulting interoperability of the
information it generates must be preserved. This interoperability is at the
heart of the value of the new tool. As part of the code downloading process,
adopters must accept an
End User Agreement to the effect that the core program architecture and data
structure must be preserved such that the data generated by the software remains
compatible with the original software. In addition, customized products may not
claim endorsement by HHS or the Surgeon General.
How should an organization proceed if it is interested in adopting, or learning more about adoption?
Those interested in adopting should
proceed directly to the download site,
http://gforge.nci.nih.gov/projects/fhh.
Is help available for those who wish to adopt the tool and its code?
The downloading process is designed to be as easy as possible. In addition, the NCI Center for Biomedical Informatics and Information Technology (CBIIT) maintains a help desk that is available to you. The help desk may be reached at:
CBIIT Application Support
Email:
ncicb@pop.nci.nih.gov
Local: 301.451.4384
Toll-Free: 888.478.4423
http://ncicb.nci.nih.gov/support
Phone support is available from 8:00AM
to 8:00 PM Eastern time, Monday through Friday, but messages can be left at off
hours. Thank you again for your interest in the family health history tool.
Is the family health history information collected with this tool protected under HIPAA Privacy Rule?
Yes. If you are a covered entity under
the Health Insurance Portability and Accountability Act of 1996 (HIPAA), the
family health information that you collect via this tool should be protected as
individually identifiable health information as required by the HIPAA Privacy
Rule. You may use and disclose this information as the Privacy Rule allows for
any other protected health information about the individual. For more
information, please see
http://www.hhs.gov/ocr/privacy/familyhealthhistoryfaqs.pdf.
What existing standards have been adopted to make the tool interoperable and EHR-ready?
In order to make the products of the
family health history tool interoperable in an EHR environment, developers of
the tool have used existing standards including the HL7 Family History Model,
LOINC, SNOMED-CT and HL7 Vocabulary. In addition, the tool includes an
applicable subset of information from the minimum core dataset for family health
history as developed pursuant to recommendations by the American Health
Information Community.