**Transcript of Cyberseminar**

**VIReC Database and Methods Seminar**

**Research Access to VA Data**

**Presenter: Linda Kok, MA**

**2/4/2013**

**Research Access to VA Data**

**2/4/2013**

Erika:Welcome to VIReC’s Database and Methods Cyber Seminar entitled Research Access to VA Data. Thank you to CIDER for providing technical and promotional support for this series. Today’s speaker is Linda Kok, technical and privacy liaison for VIReC at Hines VA Hospital. Questions will be monitored during the talk in the Q&A portion of  GoToWebinar and will be presented to Linda Kok after the first and last sections of her talk. A brief evaluation questionnaire will pop up when you close GoToWebinar. We would appreciate if you would take a few moments to complete it. 

I am pleased to welcome today’s speaker, Linda Kok.

Heidi:Linda, we are not able to hear you right now. I am not sure if you are muted or ...

Linda Kok:Yes. I was.

Heidi:Perfect. Thank you.

Linda Kok:Thank you Heidi and Erika for getting me set up here. Thank you all for attending. It is clear from your numbers that access to VA Data for Research is a topic of interest to many. I hope the presentation will answer many of your questions and concerns. We will pause midway through the presentation for questions and then again at the end.

Today we will cover only Data Access Procedures, not Data Content. Please direct questions about Data Content to the VIReC website, the VIReC help desk, or look for a later seminar session that may cover your questions.

I appreciate the kind assistance of John Quinn and Irma McCaffrey, National Data Systems or NDS, Sam White of Health Information Access or HIA, Audrey Revere of Patient Care Services or PCS, Cheryl Benson of Pharmacy Benefits Management or PBM, the VA/CMS Data for Research Project at VIReC, Jeff Scehnet, VINCI DART Development Team and Michael Wlezien, the Hines Information Security Officer or ISO and Customer Provisioning Service Point of Contact or CUPS POC for answering my many questions about access to VA data. I also want to thank Dr. Elizabeth Tarlov, associate director of VIReC, for the valuable guidance she has given me on this presentation. Any errors included in the session are my own and not the fault of these generous advisors.  

Our objectives for today’s session begin with a description of the elements involved in the data request process. Then I will describe procedures for requesting data for access granted by the CUPS points of contact at your facility, NDS through DART, HIA through VistAWeb and CAPRI, PCS, PBM, and VIReC. At the end I will identify approaches to facilitate the data request review process and a list of contacts and resources for getting help.

Let us look at elements involved in the data request process. Research data access request process parameters include access location, for example, the AITC Mainframe, Corporate Data Warehouse or VINCI. The data formats in the VA are usually SAS or SQL. By request method, I mean how or where the request is submitted, for example, through CUPS, DART, or email. Additional data request parameters include the data use or purpose, which can be for an R&D approved research study, activity preparatory to research, or healthcare operations. We are going to focus on approved research studies today.

A data source can be a database, a system, or an office that manages data. Identifiers in the VA are usually real SSN, or VHA scrambled SSN. There are three levels of data identified for some data sources: local data, which include only patients seen at the requestor’s local VHA facility; VISN data that includes patients seen at facilities within the requestor’s VISN; or national data that include patients from more than one VISN or from a VISN not the requestor’s own. Some or all of these elements taken together determine VHA data access request requirements.

Now we will turn to request procedures for access granted through your facility CUPS point of contact. Data access request approval by your CUPS point of contact is available for the medical SAS or MedSAS and other workload data, the BIRLS death data, and the Vets net data. This decision tree illustrates the instances in which the CUPS POC grants access. The first question is, are the data to be accessed on the Mainframe? If not, the data are requested through DART. If yes, the next question is, are the data needed only for patients at your facility? If yes, the request can be submitted to and approved by the CUPS POC. If the answer is no, the next question is whether real SSN identifiers are needed. If yes, the request will go through DART. If no, the request can be approved by the CUPS POC. In summary, if the data are for patients at your facility, apply to your CUPS POC. If the data are VISN or National with scrambled SSN and on the Mainframe, apply to your CUPS POC. Otherwise, for NDS data, submit your request through DART.

There are three steps to get access approval locally, that is by your CUPS POC. Step one is to complete and sign VA Form 9957. A functional task code is needed for the different datasets and types of data. The codes can be found on the NDS webpage link shown here.

Heidi:Linda, I am sorry to interrupt but we have gotten a request for you to define CUPS please.

Linda Kok: Okay. I am sorry. I introduced it at the very beginning. It was the Customer Provisioning Service is CUPS and the Point of Contact that I call the POC. So the Customer Provisioning Service Point of Contact or CUPS POC is the person at your facility that can grant access to the Mainframe for these datasets. I hope that explains more clearly. I have a lot of acronyms in the presentation and please feel free to ask Heidi to interrupt me if you need to.

Step one is to complete and sign VA Form 9957. A functional task code is needed for different datasets and different types of data. The codes can be found on the NDS webpage link shown here.

Step two is to obtain your supervisor’s signature and any other approvals required at your facility.

Step three is to submit Form 9957 to your facility CUPS POC who may be the Information Security Officer. If you do not know who the CUPS POC is, contact the national service desk. Contact information is given at the end of the slide.

When approval is granted, you will receive an email with your timesharing option or TSO login ID and a temporary password for the Austin Mainframe. More information on the 9957 may be found in the bonus slide provided at the end of the presentation and on the NDS website.

Next we will look at data requests submitted through DART for data access managed by NDS. We will stop here for a poll. Have you ever requested access to data through the Data Access Request Tracker or DART? The answer should be either yes or no.

I see that by far 86 percent of you have not used DART, but I am happy to see that there are 14 percent who have used DART and we would love to get feedback from you at VIReC. Thank you Heidi.

This table shows which DART request for research access to data on the AITC Mainframe or on CDW/VINCI provide access to complete datasets and which provides extracts of data. The first column lists the data source. The second shows the type of access for data on the Mainframe and the third shows the type of access for data on CDW/VINCI for research use.

As you see for data on the Mainframe, that is the BIRLS death file, MedSAS and other workload SAS datasets, and the VHA vital status file, direct access is granted for complete datasets. The DSS NDE SAS files row in this table is misleading. While the DSS NDE SAS datasets from fiscal 2000 to fiscal 2012 are no longer available, extracts from DSS NDE SQL domains are available. Extracts can be provided as SQL tables or as SAS datasets, although I am told it is rare that SAS datasets are requested.

To summarize, on DART where data are available on both, you will be able to request data on either the Mainframe or on CDW. If you select Mainframe data you will have access to the complete dataset. If you select CDW/VINCI for these datasets you will get custom data extracts which will be created for you. 

This table shows the OEF/OIF data and Web Reports access options. For the OEF/OIF roster file, you may request a data extract for a study cohort or request all records. DSS and VSSC Web Reports are accessed on the VSSC Website. All of these data are requested through DART.

To start the DART request process, begin on the NDS website or on VINCI Central. The NDS intranet website provides descriptions of required documents, a link to access forms, a link to functional task codes, and a launch button for DART. VINCI Central provides a link to launch DART and both sides provide a link to the DART user guide.

To begin the DART request process, enter information about the project. Note that each data request is specific to a single VA R&D committee approved research project. The information collected includes the name of the principal investigator and the names of the project team staff and their roles and primary and secondary research sites. Other information about the project is also collected.

Next, enter the information about the data needed by selecting from a list of available data. On the next screen a list of documents required will be displayed based on the data selected. Upload each required document using the browse and upload button. Click on the submit button only after double checking that the correct documents have been uploaded. Your request will proceed to review by NDS. 

This flowchart represents the DART research data access approval process for NDS data. The process begins at the top of the chart with the requestor submitting the data request. The NDS request administrator, to the right, reviews the submitted request for completeness. If the documents are complete, the initial reviewer directs the request to the privacy and security offices for review. If real SSN access is requested, the request is also sent to ORD for review. If any reviewer has a question or needs additional information about the request, you will receive an email notification with a link to a message within DART from the reviewer. Respond to the reviewer by using the communications function in DART. When all reviewers have approved the request the request is sent back to NDS for final approval. When NDS has given final approval you will receive an email notification from DART to let you know. If you have been approved for use of CDW data you will be contacted to discuss your data needs. For the Mainframe and Web Reports your access should be available within a day or two. At any time during this process, if you have questions about a delay or do not understand a request for more information, use the communications function in DART to direct your concerns to the appropriate reviewer. Note that although NDS manages access for these data and DART provides the software tool, the requirement for research access to data are established by VHA and the data steward for each data source.

This spring a new version of DART will be rolled out, providing new features and additional data sources. The research approval process/flow will remain the same. VIReC and VINCI will keep you posted as new data and new information becomes available. 

I am going to pause here. Erika, are there any questions on what we have covered so far?

Erika:There are a couple of questions Linda. 

What happens if you are research, not clinical? Can you request data if you have the proper consent form signed?

Linda Kok:Yes. If you have the proper consent forms signed, you can access. If the consent also includes a HIPAA authorization. I think I should add that. It should have language authorizing you to do that. So you need both; a consent and a HIPAA authorization. Sometimes they are the same document. But yes, if you have that, you will be able to access data. You just have to follow the instructions for each data source.

Erika:Okay. 

Please clarify the difference between DART via the Mainframe versus SSN.

Linda Kok:I am sorry. I did not quite understand.

Erika:Yes. This person asks, please clarify the difference between DART via the Mainframe versus SSN. Then the researcher also says, please walk through DART for Mainframe versus SSN.

Linda Kok:Oh, Mainframe versus CDW?

Erika:No. SSN.

Linda Kok:Oh. So the Mainframe for scrambled SSN versus the Mainframe for real SSN. Could we ask for a clarification?

Erika:Yes. Let us do that. I will go to another question in the meantime. 

I am a researcher from outside the VA. Does the information on this Webinar apply only to those who are working at affiliated VA facilities?

Linda Kok:Yes. I am sorry. There is information in the bonus slides if you download them. At the very end it shows how non-VA researchers could become affiliated with the VA in order to have access to the data. So on the last two or three slides, is the bonus slide section. Did we get a clarification on the other one? I can just run through quickly. If you are looking for scrambled SSN data on the Mainframe for those sets that I mentioned, the MedSAS, BIRLS, and Vets Net and the other one, you can request that data through CUPS. You do not need to go through the DART. Let me, if I can, go back quickly. I believe this is the one that the person was asking about. So if you are asking for the MedSAS and other workload data, BIRLS or Vets Net data not on the Mainframe that is in CDW/VINCI, then you go to DART. If you are asking for it on the Mainframe and it is local data, which can be local with real or scrambled, you go to the CUPS point of contact. If it is not local and it is real SSN, you go to DART. But if it is scrambled SSN, the answer would be no and you would go to CUPS POC. I hope that answers the question. If not, please let us know and we will get back to you by email.

Erika:How about one more for you Linda?

Linda Kok:Sure.

Erika:Is there any pre-submission IRB clearance required prior to NDS submission?

Linda Kok:Could you repeat that please?

Erika:Sure. Is there any pre-submission IRB clearance required prior to NDS submission?

Linda Kok:When you go to DART to submit your request for NDS data, you will select from the data sources that are listed on the screen in that process. The next screen that you see after you select the data sources that you want to request will have a list of all of the documents that will be required for your project. It will have a request for you to upload the protocol and your IRB’s letters of approval and your R&D letters of approval. All of that will be requested at the time. So you upload all the documents, and when all of the documents have been uploaded, there is a simple browse upload with a click, then you click on the submit button at the bottom of the screen and all of those documents are submitted directly to the database that DART uses and the NDS reviewer will have those available immediately. If you want to talk to somebody at NDS ahead of time about the process, I think we will provide the NDS email address for you and we will do that in our email answers to these questions. I did not include it in the slides today. But if you email NDS and it is given on the NDS webpage, their email address, then you could find out if there are any other conditions. As long as you complete and upload all of the documents that they ask you for on that one page, then you are ready to go. I hope that answered the question.

Erika:Thank you Linda.

Linda Kok:Next we will describe procedures for requesting access to the Electronic Health Records through Health Information Access or HIA. Here we will take a poll. Have you ever requested access to Electronic Health Records, the EHR, through VistAWeb or CAPRI? The answer should be yes or no.

Wow. This is also something that not many of you, 80 percent, have not seen. It can be very helpful for some projects. Thank you, Heidi.

This diagram shows the similarities and differences in what is available through VistAWeb and CAPRI. These are not datasets like the MedSAS data, but applications that allow you to view the records in the EHR. The main similarities between these two are that they both provide read-only access to the full set of CPRS Electronic Health Record data, one patient at a time. They require access to real SSN. You can get approval for one, many, or all VA Healthcare sites and requests for access are submitted through HIA. One note, while CAPRI does not provide VistA imaging access, it does allow the user with access granted to both to switch to VistAWeb to view VistA Imaging and back again.  

The term special user access is used to describe access to VistAWeb or CAPRI, but requestors much show that their study requires access to non-local medical records. Users can request access to one or to both simultaneously, and access is granted by HIA. See the HIA website link provided here for details of access requirements and instructions for submitting your request document. Submit questions about CAPRI and VistAWeb to HIA at hia@va.gov. Access to CAPRI and VistAWeb will be available through DART soon.

Next we will discuss how to request data managed by Patient Care Services or PCS. We will pause here for another poll for you to indicate whether you have ever requested access to data from Patient Care Services. The answer should be yes or no.

Wow. Very few of you have requested access to data from Patient Care Services. Thank you, Heidi.

Patient Care Services manages data access for many clinical data sources. As you can see on this slide, these data include Geriatrics data, Primary Care data, and Mental Health data, in addition to all of the others listed here. PCS also manages access to Specialty Care Services data, which we will see on the next slide. As shown here, there are 10 types of Specialty Care Services data that are managed by Patient Care Services or other VA offices. Cardiology, Diabetes, Oncology, and Surgery are examples. I want to note that the Surgery data will also be available through DART soon.

PCS prepares a custom analytic file for each data request. The dataset requires a data transfer agreement or DTA between the investigator and PCS. PCS creates analytic datasets for three purposes: research studies, quality improvement studies, and program evaluation studies. There are different DTA requirements for each one of these purposes. Data dictionaries and instructions for requesting data are available on the PCS SharePoint site. The URL is shown in this slide.

Next we will provide some information about requesting pharmacy data managed by Pharmacy Benefits Management System or PBM. We will pause here for a minute for you to indicate whether you have ever requested PBM data. The answers will be yes or no.

Again, we have most of you by far have not used PBM data. Thank you, Heidi.

Pharmacy Benefits Management serves as the data steward for PBM data. Researchers do not directly access the PBM database. Instead, PBM creates a custom data extract in SAS for each study. Access to PBM data begins with a submission of several documents, including a copy of the IRB approval letter, the summary of the study protocol, a completed data request form, and a data disclosure or DUA form. Further instructions on the required documents and where to mail them are available at the URL shown on the slide. You can also get a copy of the data request form on that slide.

For a last data source today we will briefly review information about requesting Medicare, Medicaid, and USRDS data managed by VIReC. We will pause here for another poll. Have you ever requested access to Centers for Medicare and Medicaid Services, that is, CMS data, or United States Renal Data System, USRDS data? The answer should be yes or no.

By far, most of you have not, 89 percent have not requested CMS data or USRDS data. Thank you, Heidi.

For each VA/CMS data request received, VIReC provides custom datasets or whole files depending on the needs of the study. VIReC provides Medicare, Medicaid, as well as Patient Assessment data. The Patient Assessment data are OASIS and MDS, Minimum dataset. VIReC also provides the Medicare Current Beneficiary Survey and USRDS data on endstage renal disease patients. 

There is a great deal of information about the VA/CMS data, including USRDS data, on VIReC’s VA/CMS website. The intranet URL is shown on the slide. Data request instructions and contact information are also available on the website. The URL for the VA/CMS request page is also shown on the slide. VIReC strongly recommends pre-request consultations to researchers who are planning to submit a request for VA/CMS data. We hope that they would be requested before the requestor obtains all of the approval signatures. Consultations are offered for reviewing VA/CMS data request forms, answering questions about the VA/CMS data request process, discussing research project goals, and the VA/CMS data that will best accomplish the goals, and providing estimated counts of study subjects based on VA/CMS data and the cohort definition. As I said, VIReC strongly recommends that requestors contact VIReC for a pre-request consultation.

In the last section, we will identify approaches to facilitate the data request review process. Our goal is to minimize data request review time. For the IRB protocol, research protocol submitted with data requests must clearly justify a need for the data requested. If you request real SSN data, the protocol should describe why it is needed. For example, you will need real SSN access if you plan to link cancer data from the National SEER cancer registry to VHA data since SEER data is available only with real SSN identifiers.

Next, clearly identify the types of data to be used to answer the research question. If you review your study’s data privacy and security plans with your facility privacy officer and ISO, you will minimize the chance that there will be questions during the review process. 

For the IRB and R&D committee approvals that you submit with your request, provide the original and current approval letters, verify that your IRB approval includes HIPAA authorization or a waiver of authorization, and informed consent forms where appropriate. For multisite studies, provide local IRB approvals for each site or VA Central IRB approval. 

When Form 9957 is required, be sure to type all fields except the signatures. Accompany signatures with the person’s name and title. PKI electronic signatures are required for DART submission and allowed but not required for other kinds of data.

General suggestions for DART submission: Be sure the electronic documents are named to identify their content or use. For example, protocols should include the word protocol in the file name. Submit only .pdf or word documents such as .doc or .docx for requests through DART. Finally, before you submit the request, check that the required documents uploaded are complete and have been uploaded to the appropriate corresponding requirement: protocol to protocol link, Form 9957 to Form 9957 link. Your request will be approved more efficiently if you respond promptly to all reviewer questions.

We have several slides listing resources that can offer assistance. For questions regarding Austin Mainframe or for DART, contact the National Service Desk. Their email address is cdco-nds@va.gov. The phone number given on the screen is 888-326-6780.

On this slide we have included the URLs for NDS information about required documents, data access forms for NDS managed requests, and the VINCI Central website which was recently revised. The VIReC website provides information on most of the datasets that we have talked about today. VIReC’s intranet website is at the link shown. It provides documentation on select VA datasets used in research; announcements on the transition of data to CDW; access portals and processing platform information, and information on data access options and methods; access requirements for select data sources; and answers to frequently asked questions.

The HSR data listerv is another helpful way to learn more about VA data. You can subscribe using the link on the VIReC website home page. Discussion among over 500 data stewards, managers, and other users provide answers to user questions. Past messages in the archives on the intranet are also available. That would be on a link on the VIReC intranet site.

The VIReC help desk at VIReC@va.gov will answer your questions or direct you to available resources on topics of interest. 

We have also provided bonus slides as I mentioned at the end of today’s presentation. The topics included in the bonus slides are Definitions of Acronyms used in this presentation, Documents Required for Access to Data Managed by NDS, Details on Completing the VA Form 9957, particularly the signature section, and Information on VA Policy on Access to VA Data for Non-VA Research.

Thank you very much for attending. In the time we have left we will try to answer as many questions as we can. VIReC will send out answers to any questions that I cannot answer today to all registered participants. Thank you very much. Erika?

Erika:Yes. Here is a question for you Linda. 

An earlier flowchart indicated that if you were not using Mainframe then you should use the DART request process. However, one of the DART slides shows Mainframe datasets. Can you please explain the difference?

Linda Kok:Yes. I am going to go back to that slide very quickly. For the MedSAS and other workload data, and BIRLS and Vets Net data, if you are looking for, this is kind of a reverse but if you are looking for the data on the Mainframe you go to the next question which is, is it data only from my local facility? If the answer to that is no, the next question is real SSN. If you are looking for MedSAS and workload data and BIRLS and Vets Net data on the Mainframe with real SSN, then you go to DART. If it is on the Mainframe with scrambled SSN, you go to the CUPS POC. I hope that answers the question. So on the DART system you can access the MedSAS and workload datasets and the BIRLS dataset on the Mainframe but only for real SSN access. If you see the little dash line, it is just for real SSN access. I hope that answers that question.

Erika:Thank you, Linda. 

Can researchers directly access CDW datasets?

Linda Kok:No. As you see on this slide, the BIRLS, MedSAS and Vital Status file are available as complete datasets so you can access them directly on the Mainframe. But if you want to use them on CDW/VINCI, for example, to combine them with data you already have up there or data that you are going to be getting up there, then you will get a custom data extract presented to your VINCI workspace for you to download to your local network server for those datasets. So any data that you can get from CDW or VINCI is going to be a data extract if you are using it for a research use.

Erika:Okay. 

How long does the research approval....

Linda Kok:I lost your audio. Erika?

Erika:Can you hear me?

Linda Kok:Yes I can. It is sort of like the blackout last night at the Superbowl.

Heidi:Yes. She is fading in and out there.

Linda Kok:Yes.

Erika:Can you hear me?

Linda Kok:I can hear you. 

Erika:Okay. 

How long does the research approval and data acquisition process take?

Linda Kok:That depends entirely on the source of data that you are asking for. If you are looking for scrambled SSN access for CDW data and your protocol and all of your waivers of authorization and everything else is all in order, your approval letters are there. If all of that is together, it should take you less than a month to get a request approved. If there are questions in your documents that do not quite explain why you would want this particular data or how you are going to use real SSN in your work and why you need them, then you will have questions come back to you from the reviewers. Sometimes that requires you to go back and get different approvals, to make amendments to your IRB. Those things are what can delay requests. Usually a request is delayed when the requestor has to provide some additional information or redo a form. That is for NDS data through DART. I cannot speak to... I believe the HIA access is again, if you have the right documents and they are in order, that one I think is pretty quick. I cannot speak to Patient Care Services or Pharmacy Benefits Management data on the time it takes for them because they are going to be pulling an extract. There is going to be some dialogue between you and the program office for that to develop the right data source and right analytic file for you. For the VA/CMS projects, again if all of your information is in order and all of your documents are complete, and the justifications for using the CMS data are appropriate, then the VIReC team here at Hines will create a dataset for you for using a cohort finder file or based on your own definition of your cohort and get that to you. That can take a couple of months or more depending on the complexity of the cohort definition. So that is pretty much all I know about. A lot of it rests on the quality and the appropriateness of the language used in the protocol. I cannot stress that enough. Thank you.

Erika:Thank you, Linda. 

How can you modify a request for data if you have an existing DUA and need to modify the request to obtain additional variables?

Linda Kok:Okay. Again this depends on whether you are going through DART, through PCS, or PBM, or VIReC. I know that VIReC and DART have processes for amending your request, for making a change and getting approval again by whoever the approving official was for that change. So if you have a document that shows that you have approval for making the change either from your IRB or a privacy officer or somebody like that, depending on the type of change, you can submit those and then make a change either while you are still requesting the data or if you have already requested and received the data, you can ask for an amendment to get additional data. I believe probably PCS and PBM would be happy to honor those kinds of requests too with the proper authorization. Thank you.

Erika:Okay. 

Is it possible to obtain data for quality improvement, not research?

Linda Kok:Yes. Actually, it is considered operations and so a lot of what we have talked about here today does not apply. You can get direct access to much of the data in CDW/VINCI when you have operations access approval. Remember at the very first I talked about the user purpose and anything that is not an IRB-approved research project or prep to research activity in the VA, if it is sponsored by a program office, it would be considered operations administration and there is a better, fuller access to those data. NDS has information about operations access to data on their website. For VA/CMS data, you would contact the Medicare Analysis Center in Boston and you can find a link to that site on the VIReC VA/CMS web pages. They handle the CMS data for operations use in the VA. Thank you.

Erika:Thank you, Linda. 

Does DART require the names of all members on the project team to be entered or just the names of research team members with access to the patient level data?

Linda Kok:The second, except for one. Even if the principal investigator is not going to access any data, the principal investigator’s name has to be included in DART. Also the name of the person coordinating the project who will be accessing DART to submit the documents and update amendments. Anybody who is going to access the DART application or who is going to access the data or is the PI should have their information in the DART submission before they submit the data. You can add additional people to the staff through an amendment process too.

Erika:Great. Thank you, Linda. 

When do you need real versus scrambled SSN and are there limitations to the linkages available with scrambled SSN?

Linda Kok:Scrambled SSN is available widely across the VHA. The datasets that we showed that were managed by NDS, the PBM data, and the PCS data pretty much all have scrambled SSN identifiers. The Electronic Health Record, which you can access through CAPRI and VistAWeb, has real SSN and does not have scrambled SSN. So if you wanted to link information from the EHR to information from the MedSAS data, you would need real SSN to do that linkage. Likewise, if you have MedSAS data and you need to look up more detailed information in the EHR through CAPRI or VistAWeb, then you would need real SSN access. Also, if you are getting data from an outside source other than CMS, like SEER, like NIH, I cannot think of other ones right now, if you are getting person-level data from outside the VA, they will not have the scrambled and usually the only way to connect those data are through real SSN. We have an example of that actually. The Institute of Medicine has data that can be linked through real SSN to VHA data.

Erika:Okay. 

Are code books published for these datasets, particularly for SAS datasets?

Linda Kok:Excuse me. I did not hear the first words.

Erika:Sure. Are code books published for these datasets, particularly for SAS datasets?

Linda Kok:For many of the SAS datasets there are research user’s guides on the VIReC website. These are available for the MedSAS data and for DSS data in particular. The research user guides have front information that explains, gives you information about the creation process of the data and the second part of the RUGs, Research User Guides, are the codes. The description of the variable, what codes there are, what code values are seen, what each of the code values mean and what format the data are in, and all of the other detailed information that you would need to use the data. The VIReC website also has tables of historic variable attributes that shows you what years individual variables were included in the data, when they started and when they stopped, and also frequencies for select discrete variables. Generally you can find all of the information for those datasets on the VIReC website that you would in a complete code book.

Erika:Thank you, Linda. 

Do you happen to know if PBM is also available for operational work, non-research?

Linda Kok:Yes. I think the data is available. You would just go to the link that I showed on the slides for PBM data and contact Cheryl Benson and she would be able to provide information on that.

Erika:  Okay. Thank you, Linda.  

How does CPRS data that is available in VINCI relate to VistAWeb and CAPRI data?

Linda Kok:Okay. CPRS data is the GUI front end for the Electronic Health Record. I hope I am not giving it. I believe if I keep this simple I will get it accurate. The VistA data are copied up to the regional data warehouses as they are being entered. Every night the data from VistA that is stored on the regional data warehouses is uploaded to the CDW. Some of that data goes into production domains on the CDW and some of it goes, well the nightly data just goes to the CDW production domain. It is not all of the VistA data but they are working on adding more and more domains all of the time. So the relationship between the CPRS data is that the CPRS is looking at the VistA data and much of the VistA data is being extracted all of the time and copied to the regional warehouse where it is extracted again and put into the CDW SQL domains.

Erika:And a second part to that question says, it might be possible to apply text-searching algorithms to CPRS. Can this be done for VistA or CAPRI data?

Linda Kok:VistA and CAPRI data are just read-only access. I mean you are really just viewing and taking down notes on what is there. I do not know of any applications like that but I certainly will try to find out for you.

Erika:Okay. 

Are real SSN’s needed for CMS and USRDS linkage?

Linda Kok:No. VIReC receives the CMS and USRDS data from NIDDK and from CMS on an annual basis and we link it up to the scrambled SSN for use in the VA. VIReC provides the CMS and the USRDS data for any research project in the VA that needs access for it. 

Erika:Okay.

Linda Kok:With scrambled SSN’s. That was my point.

Erika:What are some examples of when a real SSN is needed for a study?

Linda Kok:For example, if you got data from the Institute for Medicine the only identifier that you would have in common with the Institute of Medicine would be the real SSN. So if your study required that data, you would have to get access to the real SSN data in the VHA in order to link it up.

Erika:Maybe one or two more.

Can we download CDW data to our local server?

Linda Kok:With the right approvals, you can ask for an extract of CDW data that can be downloaded to your local network server, yes. That arrangement is done, in DART the way that it is now that arrangement is done with the CDW data managers. They discuss that issue with you. In the future there might be a way of identifying that right in the DART application.

Erika:Then a related question.

If we are requesting CDW data, will these data extracts from datasets in the DART Mainframe be from data extracts from datasets in the DART Mainframe or are we better off applying for DART Mainframe access?

Linda Kok:I am going to ask you to repeat that please.

Erika:Sure. If we are requesting CDW data, will these be data extracts from datasets in the DART Mainframe? Are we better off applying for DART Mainframe access?

Linda Kok:The data in the CDW SQL domain is not from the SAS datasets on the Mainframe. It is from VistA directly through the regional data warehouses. So it depends on what data that you really need. There is a difference between the data in the SQL databases and the data in the MedSAS files on the Mainframe. Those differences have to do with the application of editing and business rules determining which is the primary diagnosis. It is done for the MedSAS. There is a lot of business rules that apply to those data that are not applied in the CDW. So the answer to your question would depend on which kind of data, the data with the business rules applied or the data without them, that you were looking for. I do want to let you know since so many of you have not used CDW, there is an ongoing effort in the VA by NDS and CDW to apply the business rules for the MedSAS data that have come from the National Patient Care Data System which includes all of the outpatient encounters. There is a group that is working on applying all of those business rules and edits to data from CDW so that we can have something very similar that can be used with the older MedSAS data that a project might have. So I am trying to summarize what I just said. So there are differences, but work is being done to try to mitigate those differences. The results of that should be available within the year at the latest.

Erika:Thank you, Linda. I think the remaining questions we can answer off-line.

Linda Kok:Okay. We are running out of time here too.

Heidi:I just want to say our next session is scheduled for Monday, March 4th, from 1:00-2:00 p.m. Eastern and is entitled Measuring Laboratory Use and Results Using the VA DSS National Lab Data presented by Elizabeth Tarlov. 

Heidi: We will be sending registration information out to everyone on that once we get closer to that date. Thank you everyone for joining us for today’s HSR&D Cyber Seminar. Linda and Erika, thank you for taking the time to present and moderate for today’s session. We hope to see everyone at a future HSR&D Cyber Seminar. Thank you.

Linda Kok:Thank you all.

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