Family History Exchange: Difference between revisions

Revision as of 09:06, 15 October 2007

1. Proposed Profile: <initial working name for profile>

Proposal Editor: Kboone
Profile Editor: TBD
Date: N/A (Wiki keeps history)
Version: N/A (Wiki keeps history)
Domain: PCC

2. The Problem

As advances in Clinical Genomics move forward, there becomes more and more patient health information that resides in health records other than their own. This information is in the form of health information of their family members. As PHR systems advance, it is expected that this health information will be able to be shared between family members. We would like to ensure that there is a uniform way to exchange this information between systems.

3. Key Use Case

A 35-year-old female patient sees her provider, requesting genetic screening for breast cancer. Due to her age, the provider suggests that this screening is not necessary. Six months and another provider later, the patient requests the same from her new provider. The healthcare provider takes a detailed health history, and learns that the patient's mother, two sisters, and two maternal aunts were all diagnosed with breast cancer, several at an early age. Genetic screening is performed, and the patient is diagnosed with a mutation in the BRCA1 gene, which is a risk for breast cancer. Additional cancer screening is recommended.

The patient has a 10-year-old daugter, and has been maintaining a personal health record for her, as well for herself. She records a copy of her genetic screening results in her daughers PHR, and copies the breast-cancer related history also.

4. Standards & Systems

<List existing systems that are/could be involved in the problem/solution.>

<If known, list standards which might be relevant to the solution>

5. Discussion

<Include additional discussion or consider a few details which might be useful for the detailed proposal>

<Why IHE would be a good venue to solve the problem and what you think IHE should do to solve it.>

<What might the IHE technical approach be? Existing Actors? New Transactions? Additional Profiles?>

<What are some of the risks or open issues to be addressed?>

<This is the brief proposal. Try to keep it to 1 or at most 2 pages>

<Delete this Category Templates line since your specific Profile Proposal page is no longer a template.>

@@ Line 14: / Line 14: @@
 ==3. Key Use Case==
-''<Describe a short use case scenario from the user perspective.  The use case should demonstrate the integration/workflow problem.>''
+A 35-year-old female patient sees her provider, requesting genetic screening for breast cancer.  Due to her age, the provider suggests that this screening is not necessary.  Six months and another provider later, the patient requests the same from her new provider.  The healthcare provider takes a detailed health history, and learns that the patient's mother, two sisters, and two maternal aunts were all diagnosed with breast cancer, several at an early age.
+Genetic screening is performed, and the patient is diagnosed with a mutation in the BRCA1 gene, which is a risk for breast cancer.  Additional cancer screening is recommended.
-''<Feel free to add a second use case scenario demonstrating how it “should” work.  Try to indicate the people/systems, the tasks they are doing, the information they need, and hopefully where the information should come from.>''
+The patient has a 10-year-old daugter, and has been maintaining a personal health record for her, as well for herself.  She records a copy of her genetic screening results in her daughers PHR, and copies the breast-cancer related history also.
 ==4. Standards & Systems==