Skip to main content

Real-World Data: Policy Issues Regarding their Access and Use.

Publication ,  Journal Article
Basu, A; Axelsen, K; Grabowski, DC; Meltzer, DO; Polsky, D; Ridley, DB; Wiederkehr, D; Philipson, TJ
Published in: Medical care
December 2016

As real-world data (RWD) in health care begin to cross over to the Big Data realms, a panel of health economists was gathered to establish how well the current US policy environment further the goals of RWD and, if not, what can be done to improve matters. This report summarizes these discussions spanning the current US landscape of RWD availability and usefulness, private versus public development of RWD assets, the current inherent bias in terms of access to RWD, and guiding principles in providing quality assessments of new RWD studies. Three main conclusions emerge: (1) a business case is often required to incentivize investments in RWD assets. However, access restrictions for public data assets have failed to generate a proper market for these data and hence may have led to an underinvestment of public RWDs; (2) Very weak empirical evidence exist on for-profit entities misusing public RWD data entities to further their own agendas, which is the basis for supporting access restrictions of public RWD data; and (3) perhaps developing standardized metrics that could flag misuse of RWDs in an efficient way could help quell some of the fear of sharing public RWD assets with for-profit entities. It is hoped that these discussions and conclusions would pave the way for more rigorous and timely debates on the greater availability and accessibility of RWD assets.

Duke Scholars

Altmetric Attention Stats
Dimensions Citation Stats

Published In

Medical care

DOI

EISSN

1537-1948

ISSN

0025-7079

Publication Date

December 2016

Volume

54

Issue

12

Start / End Page

1038 / 1044

Related Subject Headings

  • Randomized Controlled Trials as Topic
  • Public Health
  • Information Dissemination
  • Humans
  • Health Policy & Services
  • Health Policy
  • Delivery of Health Care
  • Decision Making, Organizational
  • Data Accuracy
  • Confidentiality
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Basu, A., Axelsen, K., Grabowski, D. C., Meltzer, D. O., Polsky, D., Ridley, D. B., … Philipson, T. J. (2016). Real-World Data: Policy Issues Regarding their Access and Use. Medical Care, 54(12), 1038–1044. https://doi.org/10.1097/mlr.0000000000000603
Basu, Anirban, Kirsten Axelsen, David C. Grabowski, David O. Meltzer, Daniel Polsky, David B. Ridley, Daniel Wiederkehr, and Tomas J. Philipson. “Real-World Data: Policy Issues Regarding their Access and Use.Medical Care 54, no. 12 (December 2016): 1038–44. https://doi.org/10.1097/mlr.0000000000000603.
Basu A, Axelsen K, Grabowski DC, Meltzer DO, Polsky D, Ridley DB, et al. Real-World Data: Policy Issues Regarding their Access and Use. Medical care. 2016 Dec;54(12):1038–44.
Basu, Anirban, et al. “Real-World Data: Policy Issues Regarding their Access and Use.Medical Care, vol. 54, no. 12, Dec. 2016, pp. 1038–44. Epmc, doi:10.1097/mlr.0000000000000603.
Basu A, Axelsen K, Grabowski DC, Meltzer DO, Polsky D, Ridley DB, Wiederkehr D, Philipson TJ. Real-World Data: Policy Issues Regarding their Access and Use. Medical care. 2016 Dec;54(12):1038–1044.

Published In

Medical care

DOI

EISSN

1537-1948

ISSN

0025-7079

Publication Date

December 2016

Volume

54

Issue

12

Start / End Page

1038 / 1044

Related Subject Headings

  • Randomized Controlled Trials as Topic
  • Public Health
  • Information Dissemination
  • Humans
  • Health Policy & Services
  • Health Policy
  • Delivery of Health Care
  • Decision Making, Organizational
  • Data Accuracy
  • Confidentiality