Using Big Data - Translational Informatics: Realizing the Promise of Knowledge-Driven Healthcare - page 119

7.4 Implications for Stake Holders

As we have done in prior chapters, we can review the implications of “Big Data”
as it applies to the broad biomedical and health sciences domains by organizing
such thoughts round the major stakeholder groups we have already enumerated.
Specifi cally, we can determine that:

Evidence and Policy Generators

￿ Although the use of Big Data holds great promise, sustained progress

requires that cultural and ethical issues related to patient privacy and data
ownership be addressed. Consider a simplifi ed health care setup with a medical
group, a hospital and an insurer. Usually the hospital pays for and installs an
electronic health record system, the practitioners from the medical group enter
the data, which in turn is generated from patients during the provision of care;
the care is paid for by the insurer. Even in this simplifi ed set up who owns the
data? Most stake-holders agree that use of data for improving quality of care is
acceptable use. However, most other uses require some manner of consent, over-
sight or both. The issues get more complicated when the data under consider-
ation can also affect someone elses's privacy, as is the case with genetic data
where disclosing an individual's data also discloses some of their parent's and
sibling's data. As Larson argues, we need to build trust in the power of Big Data
to serve the public good [ 24 ].

Providers and Healthcare Organizations

￿ With the shift from a fee-for-service to a pay-for-performance model, pro-

viders have to interact in a zero-sum game to fi gure out what practices work,
which approaches are most effi cient, how to track each participants' contri-
bution to a patient's care, and how to keep patients engaged in their own
care [ 25 , 26 ]. Efforts toward close coordination and patient outreach will benefi t
immensely.

Patients and Their Communities

￿ The primary stake-holders in the decision of, and the impact of using Big
Data analyses are the patients , and by extensions, the researchers, the health-
care providers, the payers, and the regulators that collectively impact the health-
care delivered to such individuals. The “providers” group in this relationship is
the most heterogeneous group encompassing individuals (e.g., physicians or
nurse practitioners), small group practices, hospitals, and (indirectly) device and
pharmaceutical companies.
For all of the preceding stakeholders, it is crucial to have clarity on the goal of
using Big Data analyses. The goals fall into two broad groups: (1) enhancing the
practice of medicine; and (2) advancing biomedical science. It is quite common to
confuse these two goals and promise new cures in a few years after a research pub-
lication. While it is true that both biomedical science and clinical practice stand to