Recently in Biomedical Health Informatics Category

Researchers now have a simpler, more effective way to access data from Minnesota death certificate records, with the launch of a new database from the Clinical and Translational Science Institute (CTSI). CTSI will fulfill requests for death certificate record data at no charge to researchers, registries, and transplant databases at the University of Minnesota and Fairview.

The database houses the complete death record issued from 2011 to present (for deaths as recent as two months ago) for deceased individuals who were born in Minnesota, have died in Minnesota, or have ever had a permanent address in the state. CTSI collaborated with the Minnesota Department of Health to create this database, and tested it against University health data repositories to validate accuracy and help maximize its value to investigators.

"Historically, getting access to death records took a lot of time, money, and resources. Plus, it wasn't uncommon for the data itself to be incomplete or outdated, as databases would sometimes exclude records from the past few years," says Russell Luepker, MD, MS, a member of CTSI's Biomedical Informatics steering committee. "Now, researchers can quickly access up-to-date, accurate death data, with the support of dedicated informatics experts - all at no cost to them."

Researchers request this data simply by filling out an online form, which CTSI uses to generate a customized, cleaned-up dataset that's tailored to an investigator's needs. For example, a researcher could request data only from the death records, which does not require IRB approval. Or, to get a more complete picture, they could request a dataset that combines data from both death records and patient records. Patient data is extracted from CTSI's clinical data repository, which houses the electronic medical records of more than 2 million patients and can be leveraged by University and Fairview researchers at no cost to them.

"Understanding who died, and why is critical to researchers who are looking for better ways to prevent, diagnose, and treat health issues," says Bonnie Westra, PhD, RN, Co-chair of CTSI's Architecture and Informatics Committee. "The information provided by death certificate records is valuable to a wide range of research studies, and can be used in a variety of ways, from better understanding health issues to more sensitively recruiting prior patients to join studies without the risk of contacting the families of deceased individuals."

Minnesota death certificates include demographic data, such as an individual's name, gender, social security number, birth date, and date of death, as well as data about the circumstances of their death, such as the cause, site, and any external causes revealed by an autopsy.

Learn more about accessing data for research.

PCORI awards $93.5 million to develop 29 national networks to support more efficient patient-centered research

The Patient-Centered Outcomes Research Institute (PCORI) recently approved $93.5 million to support clinical research data networks that together will form an ambitious new resource known as PCORnet, the National Patient-Centered Clinical Research Network. One of the 29 data networks supported by the grant is the Greater Plains Collaborative (GPC), which includes the University of Minnesota's Academic Health Center.

GPC is a new network of 10 leading medical centers in seven states committed to a shared vision of improving healthcare delivery through ongoing learning, adoption of evidence-based practices, and active research dissemination. The collaborative group - which features eight Clinical Translational Science Award (CTSA) institutions, including the U of M - will receive $7 million in PCORI funding.

"We're proud to team with our GPC partners to help create a secure, national data network that supports more efficient, patient-centered research," says Connie Delaney, PhD, RN, who is the Dean of the U of M's School of Nursing, directs Clinical and Translational Science Institute (CTSI) Biomedical Informatics and University of Minnesota Biomedical Health Informatics, and serves as key personnel of the GPC team. "Securing this grant from PCORI is a testament to our successful research programs, data sharing network with Fairview Health Services, and collaborations - both at the U of M and across the broader GPC team."

The Greater Plains Collaborative brings together a diverse population of 6 million people across 1,300 miles covering seven states with a combined area of 679,159 square miles, and includes patients in underserved minority and rural areas. Partners by state are:

  • Kansas, the University of Kansas Medical Center

  • Missouri, Children's Mercy Hospital

  • Iowa, University of Iowa Healthcare

  • Wisconsin, the University of Wisconsin-Madison, the Medical College of Wisconsin, and Marshfield Clinic

  • Minnesota, the University of Minnesota Academic Health Center

  • Nebraska, the University of Nebraska Medical Center

  • Texas, the University of Texas Health Sciences Center at San Antonio and the University of Texas Southwestern Medical Center
  • The GPC builds on its sites' strong research programs, existing community engagement initiatives, informatics infrastructures, and data warehouses, which most sites developed through the National Institutes of Health (NIH) Clinical and Translational Science Awards (CTSA) initiative. In addition, the GPC boasts extensive expertise with commercial electronic health records (EHR) systems and terminology standardization, as well as strong working relationships between investigators and healthcare system information technology departments. The University of Minnesota's health systems partner, Fairview Health Services, is integral to this initiative.

    The GPC complements its healthcare systems' considerable investments in EHRs by using existing NIH-funded open source technologies to provide a cost-effective common data model that promotes data transparency and interoperability. These technologies include the i2b2 cohort-discovery tool and REDCap data collection application adopted by many CTSAs, including the Clinical and Translational Science Institute (CTSI), which is the academic home of the CTSA at the University of Minnesota. The GPC builds on its data repositories and their accompanying data security and de-identification methods as well as other existing CTSA and research investments.

    The GPC is a new network with proven technologies based on two common EHR systems - Epic and Cerner - used at its 10 sites, shared open source software, strong research infrastructures (e.g., CTSA programs, National Cancer Institute-funded cancer centers), and experience with patient-centered outcomes research (PCOR) and comparative effectiveness research at each site. Together, these characteristics will enable the GPC network's implementation and ensure its sustainability. Most notably, the GPC will provide a blueprint for creating de novo highly functional research data networks to conduct pragmatic PCOR and CER trials required for a national learning healthcare system.

    "This collaboration is one example of how CTSI teams up with other CTSAs to improve the efficiency and effectiveness of research," says Bruce Blazar, MD, Director of CTSI. "By sharing expertise, leveraging insights more broadly, and providing researchers with a rich data set, we can accelerate research and improve our ability to support multi-institutional studies. This is a huge win for researchers and patients alike."

    Interested in getting patient data for your research? Starting this week, CTSI's Informatics Consulting Service (ICS) will be hosting ICS Office Hours twice a week, on Tuesday afternoons and Thursday mornings.


    Come visit us to:

  • Learn more about the clinical data repository, which houses electronic medical records of more than 2 million patients.

  • Discuss your request for clinical data to help us fulfill your request more quickly.

  • See a demo on using the Data Shelter to access and analyze your data.

  • Get help using the i2b2 cohort-discovery tool.

  • ICS Office Hours will be held on:

  • Tuesdays: 2:30-3:30pm, 717 Delaware St. SE (CTSI Building), Room 212

  • Wednesdays: 9am-10am, Diehl Hall, Room 350G (enter Biomedical Library on 3rd floor)

  • Thursdays: 11am-12pm, Diehl Hall, Room 350G (enter Biomedical Library on 3rd floor)

  • We ask you to please fill out this RSVP form to let us know when you'll be coming and the particular focus of your visit. Reservations are required.

    If you cannot make it during our regular hours, we will accommodate you. You can use the ICS Office Hours RSVP form to request a visit.

    Learn more about CTSI's clinical data repository, and request data for your research.

    There is a new process for obtaining clinical data for researchers at the University of Minnesota. Health researchers NOW have access to clinical data from the electronic medical records of patients seen at Fairview Health Services hospital and clinics. Visit the Data Access page to request data and for more information..

    For routine requests, there is no charge for the service. Response time for most approved requests will be under 10 working days, as it was with requests made to Fairview Health Services. More complex queries will take longer.

    This is a core service for researchers offered by the Clinical Translational Science Institute (CTSI) and the Office of Biomedical Health Informatics (BMHI). This arrangement and the associated services are the outcome of a recently forged partnership between the University and Fairview Health Services.

    This service, will achieve key outcomes:
    • Provide critical medical/health data for health-related research.
    • Support efficient processes to ensure compliance with federal, state, and university regulations.
    • Reduce the risk of unintended use of patient data.
    • Streamline IT processes through centralizing IT server/hardware management and storage, where applicable
    • Ensure standardized employment of consistent legal agreements for vendors.
    • Provide free access to analytic tools.

    NOTE: This process will NOT impact any active data feeds from Fairview. Regular data feeds to the Academic Health Center that populate registries and research databases will continue. This change will only affect individual research requests for retrospective analysis, feasibility planning, or subject recruitment.

    If you have questions about this process, please contact the Informatics Consulting Service.

    i2b2 is a cohort discovery tool - this tool assists the researchers in determining the number of patients matching key study criteria. These criteria include patient demographics, diagnoses (ICD9 codes), procedures (ICD9 and CPT codes), and clinical information.

    Understanding study feasibility, early in your study design is a critical first step in the path to successful research.

    The i2b2 tool searches the Academic Health Center Information Exchange clinical data repository to determine the size of the cohort that meets your study criteria of interest; including patient data from the Fairview Health Services hospitals and 40+ clinics - representing over 1.8 million patients.

    Because no patient identifiers or clinical data are revealed, i2b2 is available without IRB approval.

    For more information or help with i2b2 click here. Or contact the Informatics Consulting Service.