Clinical Research Oriented Workshop (CROW) Meeting: Oct 27, 2011

Present: Kairn Kelley, Amanda Kennedy, Rodger Kessler, Ben Littenberg, and guest Mike Kenny from the Vermont Oxford Network

1. Ben: How to match individual data from two sources without exchanging any PHI

a. Ben described an area for research that attempts to analyze the impact of geographic factors on health outcomes. Ben and his collaborators hope to connect health data with information about geographic factors (“geomarkers”) near subjects’ homes. The health data may come from clinical and research databases registries housed in different health organizations. The challenge discussed today is how to respect the legal and political needs of data partners that collect the protected health information while still gaining enough information to meaningfully link health outcomes with "geomarkers" (geographic factors).

b. Potential research questions would include:

i. What are the best ways to model geomarkers?

ii. What is the relationship between geomarker ‘x’ (e.g., density of commercial real estate, or topographical slope) and health status ‘y’ (e.g., BMI or breast cancer diagnosis)?

iii. What level of analysis (i.e., individual, zip code, county, etc.) shows the strongest association between geomarkers and health status?

c. Recent stories of the consequences of erroneous release of PHI (Protected health Information) have made many organizations nervous about sharing data even for permitted purposes. In order to respond to data security concerns, Ben proposed a number of data sharing strategies that could be offered to potential partners (not all will be offered). The hope is that presenting choices to the data partner will increase trust so the least restrictive option can be selected. At least one of these options is a novel strategy, and Ben may wish to expand this into a paper. For that reason, I am limiting notes to listing the potential strategies by name:

i. Simple transfer

ii. Partner geocoding

iii. Partner geocoding with random error

iv. Partner geocoding with "snap”

v. Remote access

vi. Sneaker net

vii. Partner geocoding and association

viii. ARC model

ix. Triple transfer (name changed from Triple swap due to negative connotations for the word “swap” re: trust)

x. (Amanda also suggested “Trusted Third Party”)

2. Next Workshop Meeting(s): Thursday, 12:30 p.m. – 2:00 p.m., at Given Courtyard Level 4

a. Nov 3: Kim: research/grant opportunity (no Ben)

b. Nov 10: Amanda: survivor analysis chalk talk

c. Nov 17:

d. Nov 24: Cancelled – Thanksgiving

e. Dec 1:

f. Dec 7:

g. Dec 15: (no Ben)

h. Dec 22:

i. Future agenda to consider:

i. Ben: budgeting exercise for grant applications

ii. Rodger: Mixed methods article; article on Behavior’s Influence on Medical Conditions (unpublished)

iii. Future: Review of different types of journal articles (lit review, case study, original article, letter to editor…), when each is appropriate, tips on planning/writing (Abby)

Recorder: K. Kelley