THREDS' The Health Record Data Service

THREDS is a service provided by CTSI that extracts longitudinal data from clinical databases on Community Health Network (CHN) patients for research purposes. Various data sources are used, primarily the LCR (Lifetime Clinical Record) and Invision. Data are available going back to 1996 to answer specific research questions.

Note: THREDS is available only for projects with a PI or Co-PI strongly affiliated with both UCSF and SFGH.

Typical uses of THREDS data include:

• Summary statistics
• Generation of condition-specific patient populations for study recruitment / chart review
• Outcomes research using historical data in CHN databases

It is not appropriate to request THREDS data to build a database for non-specific research use.

The following summarizes the available data items:

• Demographic information including:
• Date of Birth
• Gender
• Race/Ethnicity
• Language
• Marital Status
• NO height/weight information
• Visit information
• Inpatient
• Outpatient
• ER
• Includes information such as attending MD, location, etc.
• Diagnoses (ICD9 codes)
• Procedures (CPT codes)
• Results of laboratory tests
• HBA1c, serum/urinary albumin, etc.
• Microbiology Results
• Type (e.g. Mycobacterium Kansasii)
• Specimen Type (urine, serum, etc.)
• Result (Text field with result of test)
• Radiology
• Type (e.g. Chest, Foot, Spinal, etc.)
• Result (Text field with MD Name and test result)
• Current insurance information
• Death information
• Matched against current California DHS Death Registry
• Current through the end of 2006
• Pharmacy
• Current medication lists

Points to Consider

• Data quality may be higher for more recent data, particularly since July 2002.
• Data bases structured for clinical care may at times make it impossible or very difficult to obtain data properly structured for particular research questions.
• THREDS has limited ability to pull very large datasets.
• THREDS focus is pulling quality, usable data; our ability to provide analysis and viewing tools is limited and may not be available due to overall workload.
• THREDS staff will make every effort to consult with you and determine what is feasible to meet your needs.
• Allow a minimum of six weeks from request submission to expected fulfillment. (If you require faster service, please contact THREDS prior to submission.)
• A clearly written request will save time and get data suited to your needs.
• Requests with a clear focus are preferable to those that appear to ask for large amounts of varied types of data for a patient population.

Procedure for Obtaining Data from THREDS

• Review the information in this web site in detail.
• Prepare your answers to the questions below.
• Submit an online THREDS Consultation Request. You will receive a confirmation email of your request.
• THREDS staff will contact you within 3 business days to assist you through the application process and send you the appropriate THREDS request forms.
• Within 5 business days of receipt of the forms, you will be contacted with a response to your application, including any needed clarifications, data issues and estimated time of completion.
• You will receive a specific data plan for review and approval prior to actual pulling of data.
• Please prepare your application carefully. After work is begun, significant changes or additions require a new application.
• THREDS is a limited resource. Although every effort will be made to fulfill your request, we cannot guarantee that all requests can be met. You can help ensure the success of your application by following the guidelines on this web page. These include six weeks lead time and a clearly written, focused request. If you are preparing a grant application to do research that will require THREDS data, please consult with us prior to submitting your application.

Requirements for Obtaining Data from THREDS

In order to use THREDS data for a research project, the following requirements must be met:

• Either the PI or the Co-PI must be affiliated with UCSF.
• Either the PI or the Co-PI must have a strong affiliation with SFGH.

Once the protocol has been accepted, researchers will be notified and the data request will be fulfilled within an agreed upon timeframe.

Beginning July 1, 2009, there will be a recharge for THREDS services of approximately $100 / hour. We will provide estimates of charges as part of the application process.

Thinking Through Your Application

1. What is your hypothesis or the research question you are investigating?
2. What is your study plan?
3. What sample size (cohort) is appropriate to pursue this question and produce meaningful results? (Note: THREDS offers the service of providing a random sample of a requested size drawn from the entire set of patients meeting criteria which you define.) Requests for cohorts greater than 5,000 patients require special justification.
4. Do you have an understanding of the amount of data that will be generated by your request? How many records and what size data file are you expecting to receive? (In this context, number of records mean number of data elements, not number of patients.)
5. Do you have the resources (personnel, skills, equipment) to deal with this volume of data?
6. What is the most appropriate form in which to receive data for your research: summary statistics, de-identified dataset, identified set with patient PHI? If at all possible, we ask you to avoid using PHI (Protected Health Information).
7. Academic Research Systems strongly recommends that summary data, de-identified data or a limited data set (see allowed and disallowed data types) be used for research whenever possible. If you believe you need PHI,
1. Are you aware that you must have a CHR approval that covers this use of patient data and that you must provide copies of both the application and the approval to THREDS?
2. For what specific purpose do you need identifiers that cannot be served by a limited data set or a using identifiers for a specific subset of your cohort? (Note: When appropriate, THREDS will provide subsequent identification of a subset of your original cohort.)
3. Are you aware of the risks, legal requirements and institutional requirements associated with the use of PHI?
4. What computer security measures and policies do you have in place to secure the data you are requesting? Please be specific.
5. What is the sunset date by which you will destroy all copies of this data?

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