Human Research Program
2011 Data Accessibility
Survey Results
Dana Bolles
2012 Feb 14
Number of Respondents
• Distributed to 462
recipients
• Survey administered
in 2011 from
Jan 13 – Feb 28
• Response rate was
only 21% (97/462)
Affiliation
Industry,
5.15%
NASA
Contractor,
36.08%
Other Specify
3%
University,
37.11%
NASA CS,
18.56%
2
Involvement in HRP
Number of Respondents (N)
25
19
12
10
8
7
9
5
1
0
1
0% represents flight medicine
3
*Total percentage is greater than 100% due to multiple responses.
Experience in Human Space Flight
22%
52%
1-3 years
Over 8 years
26%
4-8 years
4
Types of Data Sought
25
20.9% -
crew performance data
regarding performance during
a mission
20.9% -
research data specifically
structured to address a
hypothesis
26.7% -
Medical Requirements
Integration Description (MRID)
data
11.6% -
Engineering & environmental
data from vehicle(s)
9.3% -
Other flight data (blood analysis,
bone/exercise/muscle, crew post-flight
questionnaire, exercise logs, in-flight meds,
medical data from annual physicals,
recovering SLS-1 data, training and
simulation data)
10.5% -
Other data (data directly from labs at JSC,
fracture data – height and weight, in-flight
medication use, lessons learned during
missions, longitudinal data, occurrence of
medical events pre-, during, and post- flight,
science equipment performance, vitamin D
and urine/stone data from LSAH)
23
20
18
18
15
N
10
10
9
8
5
0
Eng/Env
Hypothesis
MRID
Crew
Performance
Other specific
flight data
Other
5
*Total percentage is greater than 100% due to multiple responses.
Experience with Requesting Data
61% - No
39% - Yes
24
Preconceptions
51
11
at least 5x
No need
43
Not familiar
19
1x or 2x
9
3x or 4x
6
Experience with Requesting Data (cont.)
0
10
20
Yes
Other, please specify
50
60
7
Yes, but they were not timely
No
40
20
Yes, but they were incomplete
No, because my data request is too recent
30
5
1
3
6
No Reply
55
Number of Respondents (N)
If no data, what were the reasons given?
N/A
none
No response
Have not received a response yet
No specific requirement for data.
not systematically recorded
when 'no,' either not avail or permissions
data not available or can not be released;
I had asked for data that were not available
0
1
2
3
Number of Respondents (N)
7
Evidence Resources Used
45
40
Number of Respondents (N)
40
35
30
25
20
15
10
12
13
10
11
11
Other
(please specify)
No Reply
5
0
LSDA
LSAH
Evidence Book
Own Research
8
Familiarity with Data Accessibility
Almost half (48.6% avg.) were minimally familiar with
 Data Accessibility presentation given by Dr. Clarence Sams [Q5]
 processes to obtain and request research/medical data [Q12-13, Q16-17]
 Medical Requirements Integration Descriptions (MRIDs) [Q14]
The majority (73% avg.) were at least somewhat familiar with
 federal protection requirements [Q6]
 study participant’s rights & confidentiality [Q7, Q11]
 using pooled, attributable, and de-identified data [Q8-Q10]
Privacy
Act
Ongoing flight experiments conducted by others that could complement your
experiments [Q15]
 Responses were varied across the board with almost equal amounts answering
either familiar or unfamiliar.
9
Frequency of Use in Past Year
 65% did not search MRID descriptions [Q18]
 66% did not request access to pooled data from the
LSAH [Q19]
10
Level of Satisfaction
• Approximately 65%-74% of the responses were either “N/A” or
“No Reply”
• Of the remaining participants, the majority (average 76.5%) were at
least somewhat satisfied [rating of 3,4, or 5]
 quality of data received
from the LSDA [Q23]
 timeliness & quality of
flight data
[Q24, Q25]
 access to data despite
the constraints of the
Privacy Act of 1974 [Q26]
11
Level of Satisfaction (cont.)
An average 54.1% were minimally satisfied
[rating of 1 or 2]
 timeliness [Q20] & quality [Q21] of data received from LSAH
 timeliness of data requested from LSDA [Q22] was varied
across the board
12
Disposition of 23 Suggestions from the
2011 Data Accessibility Survey
2
3
13
5
Addressed by current processes
Closed items
Open - corrective actions in progress
Open - resolution under investigation
13
Making the Data More Accessible (cont.)
13 Closed – current processes address concerns
• …It is not clear to me that NASA has protections for data sharing…

Executive committees confirm release of data and new policies are in development to
reinforce it. Refer to http://lsda.jsc.nasa.gov/common/dataRequestFAQ.cfm
• Staffing (e.g., data programmer, curator)

•
Data programmers and curators are on staff.
Communications (e.g., access portals & descriptions, road shows, provide periodic
briefings)

The LSDA/LSAH team has provided a series of data accessibility/awareness presentations
and activities, ranging from large audience briefings, such as Humans in Space 2011 and
AsMA 2011, to smaller format briefings for HRP and Space Medicine Division. In addition,
the data request review committee (EBWG) works directly with each individual data
requester. Outreach efforts are ongoing.

The link to the LSDA public web site was added to the following web sites: HRP Portal,
NSBRI, SMO, NSPIRES, and the HRR. The LSDA public web site contains the data request
portal: http://lsda.jsc.nasa.gov/common/dataRequest/dataRequest.cfm
14
Making the Data More Accessible (cont.)
13 Closed – current processes address concerns
• Develop and document SOPs for accessing data.

You will find much of the information that would be in SOPs included in the User’s Guide to
Requesting NASA Data at: http://lsda.jsc.nasa.gov/common/dataRequestFAQ.cfm
• …if there were a central site that outlined the data available and the process to obtain
these data…
• …FAQ site would be helpful.
• …have a single concise document that summarizes the types of data available…
• An automated online form or template for requests may be helpful..
• …a user tutorial link sent out to people…

In 2011, LSDA revamped its website to be more user-friendly and to house “all things on
data accessibility.” The data request portal, found at :
http://lsda.jsc.nasa.gov/common/dataRequest/dataRequest.cfm, includes features such as
FAQ , an e-document that defines data types and the data request process, online forms
and templates, and a user tutorial link.
• …spend necessary funds to get all flight medical data archived in a common format in
one electronic repository.

Federal law prohibits us from combining medical and research data.
15
Making the Data More Accessible (cont.)
5 Closed
• Provide regular e-mail reminders regarding the availability of this data and how to
access it…

The first email reminder was sent to the IWS distribution list on 11/30/11. The goal is to
send reminders every 6 months.
• I do not know of these services…could you please provide some more information?

An email was sent on 8/30/11, providing the investigator with the link to the LSDA web site.
• Can we get away from these tiny windows?

The text fields for the 2012 survey are expandable. Grab the corner and adjust, as needed.
• More clearly state types of data and how to access it and maybe have a liaison who
would work with researchers to facilitate it when needed.

Each data request is assigned a liaison person to work with them on their request.

Website design is continually updated to communicate more information to users about the
types of data that are available.
• …if someone or something could get back to you…that they received your request for
data…

The LSDA Website automatically notifies the requester when the data request is received.
16
Making the Data More Accessible (cont.)
3 Open – corrective actions in progress
• Written communication to the requester…a timeline of the steps and process to
follow.

The LSDA/LSAH team is currently grouping types of data requests in S/M/L categories and
developing an expected timeline for each category, to better communicate to the user how
long his/her request will likely take.
• Probably need to be able to search the database much better.

By Sept 2012, we'll be using a whole new and improved search engine.
• Identify way to go back to former crew to request permission to use medical data
quickly.

Federal law requires NASA to re-consent all astronaut subjects for (1) use of their medical
data for research purposes and (2) use of their research data for purposes other than the
original research. The consenting process is expected to begin in Spring/Summer 2012 after
CPHS annual renewal of both repositories.
2 Open Actions – resolution is under investigation
• Pair outside researchers with NASA scientists for data access.
• Develop a data model that establishes and maintains relationships between the data sets, that
can be updated wiki style.
17
Back-up Charts
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