Form 1 Health Science Data Needs As survey instrument

Health Science Data Access and Use Analysis

Survey Overview
The National Information Center on Health Services Research and Health Care Technology
(NICHSR) has developed the Health Science Data Access and Use Analysis survey to better
understand the use and interests related to clinical data and analytical tools by NIH intramural
researchers, as well as the areas for growth and improvement. This survey will seek to inform of
the resources and tools currently applied to data science research, their uses, and how they link
varying data types, such as real world data. As found by NCBI in a 2017 literature review and
stakeholder interviews, real world data is most commonly defined as data collected in a nonrandomized controlled trial setting. The results will assist with identification of gaps between what
is available and accessible versus what is desired or needed to conduct the most robust data
driven research.
The Health Science Data Access and Use Analysis survey consists of 19 questions and will take
approximately 15 minutes to complete. We intend to survey intramural researchers from NIH.
Responses will be aggregated, so complete confidentiality will be maintained.
Health Science Data Access and Use Analysis
OMB Control Number: 0925-0648
Expiration Date: May 31, 2021
Public reporting burden for this collection of information is estimated to average 15 minutes per
response, including the time for reviewing instructions, searching existing data sources, gathering
and maintaining the data needed, and completing and reviewing the collection of information. An
agency may not conduct or sponsor, and a person is not required to respond to, a collection of
information unless it displays a current valid OMB control number. Send comments regarding this
burden estimate or any other aspect of this collection of information, including suggestions for
reducing this burden, to NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda,
MD 20892-7974, ATTN: PRA (0925-0648). Do not return the completed form to this address.

1

1. In which of the following NIH Institutes and Centers do you work? Please select only one.
CC (NIH Clinical Center)
CIT (Center for Information Technology)
CSR (Center for Scientific Review)
FIC (Fogarty International Center)
NCATS (National Center for Advancing Translational Sciences)
NCCIH (National Center for Complementary and Integrative Health)
NCI (National Cancer Institute)
NEI (National Eye Institute)
NHGRI (National Human Genome Research Institute)
NHLBI (National Heart, Lung, and Blood Institute)
NIA (National Institute on Aging)
NIAAA (National Institute on Alcohol Abuse and Alcoholism)
NIAID (National Institute of Allergy and Infectious Diseases)
NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases)
NIBIB (National Institute of Biomedical Imaging and Bioengineering)
NICHD (Eunice Kennedy Shriver National Institute of Child Health and Human Development)
NIDA (National Institute on Drug Abuse)
NIDCD (National Institute on Deafness and Other Communication Disorders)
NIDCR (National Institute of Dental and Craniofacial Research)
NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases)
NIEHS (National Institute of Environmental Health Sciences)
NIGMS (National Institute of General Medical Sciences)
NIMH (National Institute of Mental Health)
NIMHD (National Institute on Minority Health and Health Disparities)
NINDS (National Insitute of Neurological Disorders and Stroke)
NINR (National Institute of Nursing Research)
NLM (National Library of Medicine)
OD (Office of the DIrector)

* 2. Which of your degrees and/or certifications are applicable to your role? (e.g. PhD, RN)

2

* 3. What role(s) do you play in data science research? Please select all that apply.
Clinical

Quality

Research

Technical

Policy
Other (please specify)

* 4. In which category(ies) do you conduct research? Please select all that apply.
Clinical

Population

Laboratory
Other (please specify)

Health Science Data Access and Use Analysis

* 5. Indicate the relevance to your work.
Very Low

Low

Medium

High

Very High

N/A

Capture and create
metadata (descriptive
information about your
data, how it was
collected, and other
contextualizing
information)
Use common data
elements, ontologies
(formal models of
concepts within a
domain and their
relationships), or other
predefined terms for
describing your data or
variables
Organize, tag, and track
data so multiple team
members can work on
the same dataset

3

Very Low

Low

Medium

High

Very High

N/A

Conduct research
through data mining
(using computational
methods to discover
patterns in large
datasets)
Locate and obtain other
researchers’ shared data
to use in your research,
and clean or process it to
meet your research
needs
Demonstrate, analyze,
or communicate your
research results through
data visualization
Create a plan for longterm storage and
retention of your data
Publish and deposit data
in a repository suited to
your research field
Write a formal data
management plan,
including selecting file
formats, choosing a
standard for data
description, and planning
for storage and
preservation

4

* 6. Please indicate which of the following sources of data are currently or potentially relevant to your
research:

No interest

Potentially helpful to my
research

Essential to current
research

Essential to future
research-currently don’t
have acces

electronic health records
(EHRs)
electronic Patient
Reported Outcomes
(ePRO)
patient registries
clinical trial summary
(aggregate) data
clinical trial individual
patient data
insurance medical
claims

Health Science Data Access and Use Analysis

* 7. How valuable for your research would it be to have access to a resource that integrated data from
insurance billing claims, electronic health records (EHRs), and patient registries? (0=not useful,
5=essential)
0 (not useful)

5 (essential)

* 8. How important is it to you for the data sources you use to be open and have limited restrictions of use?
0 (not useful)

5 (essential)

* 9. Please provide a rough estimate of the percentage of time – expressed as a whole number between 0
and 100 – you spend per week preparing data? (Preparing data is defined as a process of normalizing and
features filtering in order to prepare the data for analysis; Source: A data analysis framework for biomedical
big data: Application on mesoderm differentiation of human pluripotent stem cells:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487013/)

5

Health Science Data Access and Use Analysis

* 10. Of these, which types of data do you use? Please select all that apply.
Structured

Real-World

Unstructured

Public

Simulated/Synthetic

Private

* 11. What methods do you use for analyzing your data? Please select all that apply.
Machine Learning

Text Analytics

Linear Regression

Bayesian Methods

Nonlinear Regression

Simulation

Classification

Prescriptive Analysis

Data Mining

Natural Language Processing

Other (please specify)

* 12. How do you define an acceptable data quality level?

* 13. When working with data, what barriers do you face? Please select all that apply.
Inconsistent Data

Lack of domain expert input

Incomplete Data

Multiple ad-hoc environments

Duplicative Data

Limitations of tools

Lack of strong data analytics skills

Coordination with IT

Lack of management support for use of data and tools

Difficult to explain data science to others

Lack of financial support for use of data and tools

Issues with privacy

Data unavailable or difficult to access

Unclear expectations for project impact

Results not used by decision makers

Integrating findings into decisions

Health Science Data Access and Use Analysis

6

* 14. What is the primary objective for use of data in your research?

* 15. 15. Please provide 1-2 examples of a typical research question for you or your team that would require
collection and/or analysis of data? (e.g. "What microbiome characteristics of children exposed to antibiotics
and different diets influence long-term health outcomes?” or "What are the genetic, epigenetic, and
environmental factors of endometriosis, and how can they help us identify its subtypes?")

Health Science Data Access and Use Analysis

* 16. In which areas, if any, do you need help with access to bioinformatics resources for your research
program? Please select all that apply.
None at all

A little

A lot

Experimental
design/planning
(replicates,
randomization)
Data analysis
Data management
Statistics
Software/Software
planning
Storage
Security
Computers/Equipment
Training
Standards
Sharing/Collaborating
Licensing

7

* 17. Select the data resources you currently use and are interested in using. Please select all that apply.
Currently use

Interested in using

Agency Core Support
Services, e.g. NIH CREx
(Collaborative Research
Exchange)
NIH Library
Common Data Elements
(CDEs) – use,
recommend, contribute
to a repository
Data Cleansing, e.g.
Drake, OpenRefine
Data Dictionary
Data Capture tools, e.g.
REDCap
Data Extraction tools,
e.g. Octoparse, Talend,
Informatica
Data Repositories, e.g.
NIH Data Sharing
Repositories
Data Visualization tools,
e.g. Tableau,
Datawrapper, Spotfire
Formal Vocabularies,
Terminologies,
Ontologies, or Coding
Systems
Open Source Data tools,
e.g. RapidMiner,
Hadoop
Sentiment tools, e.g.
Opentext, Semantria
Statistical
Programming/Analysis
tools, e.g. R, SAS,
MiniTab

* 18. What types of training or resources did you take in order to use those tools?

Health Science Data Access and Use Analysis

8

19. Please share any final thoughts regarding the current and future needs for your research not captured
through the survey. We value your insight.

9