ISPOR DIGEST OF DATABASES SPECIAL INTEREST GROUP
ISPOR Digest of International Databases Working Group
Co-Chairs:
Carl Asche, PhD, MBA, MSc, BA
Professor & Director, Center for Outcomes Research University of Illinois College of Medicine
Peoria, IL, USA
Elisabeth Oehrlein, BA
PhD Candidate, Dept. Pharmaceutical Health Services Research
University of Maryland
Baltimore, MD, USA
Leadership Group:

Mehmet Burcu, PhD, MS, Center for Oberservational and Real World Evidence, Merck & Co., Inc.
Maya Hanna, MPH, BSc, PhD Candidate, Pharmaceutical Health Services Research, University of Maryland, Baltimore, MD, USA
Tove Holm-Larsen, PhD, MSc, CEO, Pharma Evidence, Farum, Denmark
Michael Johnson, PhD, Associate Professor, University of Houston, College of Pharmacy, Houston, TX, USA
Brendan J. Kelly, PharmD, BSc, President, CEAS Collective, Chico, CA, USA
Guilhem Pietri, MSc, BSc, BA, Founder and Consultant, Data Pyxis Ltd, St. Albans, England, United Kingdom
Brian Seal, RPh, MBA, PhD, Senior Director HEOR, AstraZeneca Pharmaceuticals LP, Gaithersburg, MD, USA
Jeffrey Thompson, MSc, BSc, PhD Candidate, University of Cincinnati, Cincinnati, OH, USA

Goal:

The purpose and goal of this Special Interest Group (SIG) is to review the existing Digest of International Databases to determine which databases should be updated and which databases should be added. We aim to upgrade the current Digest so that it not only includes updated information, but also takes on a new, user-friendly format that will be of greater value to ISPOR members.

Background:

In 2008, ISPOR developed an electronic index (digest) of international databases. Currently the Digest lists 390 databases from 47 different countries. The Digest consists of key attributes of health care databases and is grouped by country. The Digest is an invaluable source of information for health care outcomes researchers, health care decision makers, clinicians, and ultimately, patients around the world. A search function allows searches by type of database and displays the results side by side on the screen.

In order for the Digest to remain a useful resource to researchers, the information provided must be accurate, up-to-date, and comprehensive. Over the past 7 years, it has been increasing difficult to recruit new organizations that have health care databases to post their information to the site and to get existing database information updated. There is an urgent need to update and upgrade the existing Digest and to improve the format, search, report, and print functions.

Outline:

The updated Digest will serve to:

  1. Identify which of the existing databases require updating
  2. Identify which new databases require inclusion in the digest
  3. Determine what format will be taken to depict the databases including:
    1. Database name (e.g. Medicaid, MarketScan, MEPS, KID, SID, NIS, NAMCES, NHANES, etc…)
    2. Database type (e.g. claims, registry, survey, etc…)
    3. Database accessibility (e.g. website link)
    4. Database cost (e.g. free/pay) etc…
    5. Database description (overall as per what is used in the respective database website; how data is collected; special features etc…; applicable study designs (e.g. longitudinal, cross sectional, cohort, etc…)
    6. Attributes (e.g. lab values, disease specific data, generalizability of results, data security for identifiable data, etc…).
    7. Important Considerations (e.g. must weight data in datasets such as the KID/MEPS/NAMCES/NHANES to provide national estimates, must use full KID dataset when running tests of statistical significance due to variance estimation, etc…).

Work Product:

Updated Digest of International Databases

Activities:

ISPOR Digest of International Databases Working Group
November 2017 – 20th Annual European Congress, Open Meeting Presentation, Glasgow, Scotland, UK

ISPOR Digest of International Databases Working Group
May 2017 – 22nd Annual International Meeting, Open Meeting Presentation, Boston, MA, USA

Uses, Applications and Future Directions of the ISPOR Digest of International Databases
November 2016 – 19th Annual European Congress, Forum Presentation, Vienna, Austria

ISPOR Digest of International Databases Working Group
May 2016 – 21st Annual International Meeting, Open Meeting Presentation, Washington, DC, USA

Work product timeline:

Activity

Date

SIG project initiated

May - June 2015

Members solicited to work on project

May - June 2015

Refine and develop detailed outline

July - August 2015

Assign responsibility to SIG members

August - September 2015

Meeting at the ISPOR 18th Annual European Congress in Milan, Italy

November 9, 2015

Assess domains of Digest

January - April 2016

Open meeting at ISPOR 21st Annual International Meeting in Washington, DC, USA

May 23, 2016

Forum presentation at ISPOR 19th Annual European Congress in Vienna, Austria

November 1, 2016

Draft survey to collect databases

November 2016 – February 2017

Reach out to members and chapters to identify databases in regions

February - September 2017

Open meeting at ISPOR 22nd Annual International Meeting May 2017

Clean and assess data collected from members and chapters

September 2017 - September 2018

Open meeting at ISPOR 20th Annual European Congress

November 2017

Complete update of Digest

September 2018 - February 2019

To join this SIG Working Group, see: Join a Special Interest Group.

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