The document discusses the challenges and solutions related to accessing health data and information, highlighting issues such as legislative privacy protections, data capture, cleaning, security, and stewardship. It proposes various solutions, including establishing data enclaves, improving electronic health record usability, utilizing automated cleaning tools, and implementing robust security measures. Ultimately, it emphasizes the need for commitment and resources to overcome these barriers and improve healthcare analytics.

1. Access to Health Data and
Information – Challenges &
Solutions
Dr Venkatesh Karthikeyan
Junior Resident
Department of Community & Family Medicine
AIIMS Patna
30/01/2021

2. • Why do we need access to Health Data and
Information?
• What are the challenges we have?
• What are the possible interventions that can e
made so that access becomes easy for
patients and doctors?

3. Introduction
• There has been a dramatic increase in the
types of micro-data, and this holds great
promise for health services research.
• But there are several challenges in access to
Health data and information

4. Turning data assets into data insights
• Healthier patients
• Lower care costs
• More visibility into performance
• Higher staff and consumer satisfaction rates

5. Challenge 1
Legislative efforts to protect individual privacy
Reduction in the flow of health care data for
research purposes
Increased costs and delays
Affects the quality of analysis

6. Solution
Establish a remote access “data enclave”
• Statistical protections are applied to the data
• Technical protections ensure compliance with
data-sharing requirements
• Operational controls limit the researchers'
access to the data they need for their specific
research questions

7. Challenge 2
Data Capture
• Poor EHR usability
• Convoluted workflows
• Incomplete understanding of why big data is
important to capture well

8. Solution
• Prioritizing valuable data types for specific
projects
• Developing clinical documentation
improvement programs
• Coach clinicians about how to ensure that
data is useful for downstream analytics

9. Challenge 3
Data cleaning
To ensure that datasets are
• Accurate
• Correct
• Consistent
• Relevant
• Not corrupted in any way

10. Solution
• Usage of Automated scrubbing tools
• Reduction in the time and expense required to
ensure high levels of accuracy and integrity in
healthcare data warehouses

11. Challenge 4
STORAGE
• Cost
• Security
• Performance issue for the IT department

12. Solution
Cloud storage
• Disaster recovery
• Lower up-front costs
• Easier expansion

13. Challenge 5
Data security
• Hacking
• Ransomware episodes
• Phishing attacks
• Malware
• Human carelessness
• Nearly infinite array of vulnerabilities

14. The NHS Cyberattack - 2017
• WannaCry outbreak
– afflicting over 200,000 computers in over 150
countries
– Costing the UK £92 million and running up global
costs of up to a whopping £6 billion
– Although they were reported to have known of
the software’s vulnerabilities, the NSA didn’t bring
it to Microsoft’s attention until the hacker group
called Shadow Brokers leaked EternalBlue to an
obscure website.

15. Solution
• Anti-virus software
• Set up firewalls
• Encrypting sensitive data
• Using multi-factor authentication

16. • Remind their staff members of the critical
nature of data security protocols
• Consistently review who has access to high-
value data assets to prevent malicious parties
from causing damage.

17. SAFER Guides
• Safety Assurance Factors for EHR Resilience
• Self assessment checklist – identifies
organization’s level of implementation of
practices for safe EHR
• https://www.healthit.gov/topic/safety/safer-
guides

18. Challenge 6
STEWARDSHIP
Data may also be reused or reexamined for
other purposes, such as quality measurement
or performance benchmarking

19. Solution
• Healthcare organizations should assign a data
steward
• to handle the development and curation of meaningful
metadata.
• to ensure that all elements
– have standard definitions and formats,
– are documented appropriately from creation to deletion
– remain useful for the tasks at hand.

20. Challenge 7
UPDATING
Healthcare data is not static, and most elements
will require relatively frequent updates in
order to remain current and relevant.

21. Solution
• Have a clear idea of
– which datasets need manual updating
– which can be automated
– how to complete this process without downtime
for end-users
– how to ensure that updates can be conducted
without damaging the quality or integrity of the
dataset.

22. Major challenges
• Legislative efforts to protect individual privacy
• Data Capture
• Data cleaning
• STORAGE
• Data security
• STEWARDSHIP
• UPDATING

23. Conclusion
• The road to meaningful healthcare analytics is
a rocky one, however, filled with challenges
and problems to solve.
• Solutions will take time, commitment,
funding, and communication – but success will
ease the burdens of all those concerns.

24. References
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2965886/
• https://healthitanalytics.com/news/top-10-challenges-of-big-data-
analytics-in-healthcare
• https://www.healthit.gov/video/how-use-safer-
guides#:~:text=The%20SAFER%20Guides%20are%20designed,Syste
m%20Configuration%2C%20System%20Interfaces%2C%20Patient
• Abowd J, Lane J. New Approaches to Confidentiality Protection:
Synthetic Data, Remote Access and Research Data Centers. In:
Domingo-Ferrer J, Torra V, editors. Privacy in Statistical
Databases. Berlin: Springer-Verlag; 2004. pp. 282–289. [Google
Scholar]

25. Sincere Thanks to
Prof. Dr. Supten Sarbadhikari