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Linking Data Through a Public - Private Partnership: The State Perspective

Linking Data Through a Public - Private Partnership: The State Perspective. Angela Nannini, FNP, PhD Pregnancy to Early Life Longitudinal Linkage Project angela.nannini@state.ma.us December 11, 2003.

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Linking Data Through a Public - Private Partnership: The State Perspective

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  1. Linking Data Through a Public - Private Partnership: The State Perspective Angela Nannini, FNP, PhD Pregnancy to Early Life Longitudinal Linkage Project angela.nannini@state.ma.us December 11, 2003

  2. “ OK, calm down- move away from the windows and tell me whether you are a Cubs or a Red Sox fan.”

  3. Pregnancy to Early Life Longitudinal Database in MA • History of data linkage pre-PELL • State perspective • Building private-public collaborations • PELL Start-up • Innovation evolving to sustainability • Tips for states thinking about linking

  4. MA Data Linkage Pre-PELL • Past Linkages: • Birth-infant death link – 1980s • Pregnancy-associated mortality since 1998 • Uterine rupture (UR) study link (CDC/BUSPH) 1999 • Outside researchers guest linkers at DPH • Institutional recognition of value of linkage • Past projects • Inspiration from successes of other states • Tried to get funding on our own • Various attempts to link client across state-funded programs

  5. MA DPH Partnership with BUSPH/CDC • Past collaboration with Uterine Rupture Study (CDC/BU) • Initial team • Benefits: • Work with experienced researchers from BU and CDC • Insulate from political changes • Change of Governor • Change of Commissioner • Insulate from the state budget process • Enables more expert programming help dedicated to task • Issues • Share ownership/control of project • Weighing PELL team interests vs. State interests

  6. 1. Approving the linkage of confidential data with many variables without prior analysis plan 2. Concerns about the amount of data private partner has access to 3. Caveats with each dataset DPH did not own all the data Program administrative data had extra protections Program staff could not always supply data 1. - Linkage at DPH by BU programmer - Deputize BU programmer - DPH still owned the data 2. Establish process for feasibility runs before full studies 3. - Two interagency agreements - Meetings with program staff to understand data - Get linker variables if all data not available PELL Start-UpChallenges Solutions

  7. From Innovation to Sustainability What’s PELL? New Idea PELL as a way of life Introducing PELL PELL 101 for DPH Stakeholders Link Pro Demo for DPH Technical assistance by BU

  8. From Innovation to Sustainability New Idea PELL as a way of life Have you thought about using PELL? Beginning of PELL diffusion PELL data suggested for managed care analysis PELL 202 – New data from linkage Demonstrate quality of linkage

  9. From Innovation to Sustainability Let’s link more data to PELL! New Idea PELL as a way of life PELL begins adaptation DPH staff wants other datasets linked Care Coordination NICU data Need adjustments to deal with new datasets

  10. From Innovation to Sustainability We need PELL data now! New Idea PELL as a way of life • PELL challenged to provide data in timely manner • Program Evaluation: Early Intervention • Needs assessment: Family Planning RFR • - Short Interpregnancy periods in high risk cities • Issues related to permission delays and creating data files

  11. From Innovation to Sustainability How can we shape the next generation of PELL? New Idea PELL as a way of life Institutionalize the PELL Project Need plan for ongoing linkages Need ongoing blueprint for use of data

  12. PELL….The Next Generation • Need plan for ongoing linkages • Existing and new data links • Develop technical expertise at DPH, e.g. download data • Streamline access and approval processes • Need ongoing blueprint for use of data • Integrate PELL into surveillance, evaluation, program planning e.g. annual reports • Plan for use of outside researchers or public access to certain PELL elements e.g. MassCHIP • Seize new opportunities in state reorganization

  13. Tips for States Thinking About Linking Getting started • IRBs are not a small issue • Workforce • Skilled programmer for early quality product • Need both Program and Epidemiology staff • Logistics and identifying strategic opportunities • Research collaborators • Expertise and help to insulate project from political changes • Develop an initial blueprint for the linkage and uses • Adapting the plan with stakeholder input is the path to sustainability • Balance linking with output • Communication • Keep stakeholders engaged but don’t get expectations too high • Resources • Can $ be mobilized from other linkages

  14. Tips for States Thinking About Linking After start-up • Pay attention to core public health functions • E.g. surveillance, program planning and evaluation • If elements of linked data are part of ongoing work plan better than if one time events • Communication with key stakeholders • Keep current with prevailing political agendas • Discuss resources needed as well as the benefits

  15. Tips for States Thinking About Linking After start-up • Establish plan for ongoing linkage activities • When to use linked data and when not to • Streamline access to data and timeliness of data • Build in data quality improvement activities • Set up systems to get each data set at specific intervals • “Don’t stop thinking about tomorrow”

  16. Boston Globe, 11/8/03 PELL Evolving: The State Perspective

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