Minnesota All Payer Claims Database
Workgroup Meeting #4
Data Release Governance
October 14, 2014
Kris Van Amber
Senior Management Consultant
Management Analysis & Development
Minnesota Management & Budget
Linda Green
Vice President, Programs
Freedman HealthCare
Agenda
Welcome and Introductions – Kris Van Amber
Agenda Overview – Linda Green and Kris Van Amber
10 min
5 min
Review Recommendations to Date
30 min
Break
10 min
Data Release Governance Overview and Discussion
2 hours
Next Steps – Linda Green & Kris Van Amber
5 min
Adjourn
2
SUMMARY OF DISCUSSION AND
RECOMMENDATIONS TO DATE
3
Data Uses
The Workgroup proposed an iterative approach to data use. Allowable
uses will evolve as understanding of data quality grows. The
Workgroup’s discussion covered two major themes.
• Some members recommended a general principle that APCD data should be used
for a broad range of purposes, as permitted under HIPAA disclosure rules.
• Achieving the Triple Aim requires data to measure progress and course correct.
• Minnesota has an express policy of using publicly collected data in the public interest.
• Datasets should be tailored (minimum necessary data) to minimize the risk of inappropriate
use
• Access to data should be tiered based on protecting patient privacy and minimizing the risk
of re-identification.
• Some members recommended a case-by-case review of every proposed APCD data
use that would evaluate the particular use based on criteria such as:
Whether the data use is supported by the data quality
Whether the data use has potential market impact
Whether the data use is responsible
Whether data use will result in a report with high stakes implications (e.g. affecting
provider reimbursement).
• Whether the use has been approve by an IRB
•
•
•
•
The Workgroup discussed whether publishing a report was a necessary
requirement for data use to be “in the public interest.”
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Data Privacy and Security
Data Privacy
• The Workgroup recommended adhering to HIPAA privacy protections
for data release with respect to suppression, aggregation and
appropriate data fields and file structure for Limited and Public Use
datasets.
Unique Identifiers
• The Workgroup supported increasing the number and type of
individual identifiers collected to improve and expand the APCD.
• This addition supports types of research and analysis that are not
currently possible.
• Data inputs can be audited, increasing user confidence about the
credibility and reliability of the data.
• Additional language about privacy protections will be needed.
5
Data Quality Webinar – September 30
Purpose: Describe APCD data quality initiatives in MN
and nationally
Presentation by Onpoint Health Data, the MN APCD Data
Intake vendor
Short introductions to two other established APCDs:
• Colorado APCD: Jonathan Mathieu, Director of Data and
Research, Center for Improving Value in Health Care
• Massachusetts APCD: Marilyn Kramer, Deputy Executive
Director, Center for Health Information and Analysis,
Commonwealth of Massachusetts
Open to questions and answers from webinar participants
6
Data Quality
The Workgroup discussed whether and how an assessment of
data quality should be incorporated into data use decisions.
• Some members recommended that an independent panel determines
whether data quality aligns with the proposed use.
• Some members recommended that MDH continue to share the results
of data quality analyses and maintain transparency going forward as
a means of confirming the reliability of the data for the proposed use.
• Some members recommended that a group review the methodology
and analytic accuracy of every report prepared with APCD data.
When unique identifiers are available, the Workgroup indicated
that that providers should be able to audit data about their
patients to improve data quality.
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Feedback from the Workgroup
Do these summaries represent the sense of the
workgroup?
Recognizing that members have different points of view,
does the Workgroup wish to offer the Legislature any
guidance about:
• Increasing health care price transparency for consumers?
• Broader public access to the data?
8
DATA RELEASE GOVERNANCE
9
Legislative Question
From the Legislature: What type of advisory or
governing body should guide the release of data from the
all-payer claims database?
• What is data release and what is its purpose?
• What type of body?
• What type of guidance?
10
A Sample Definition and Purpose
US CDC http://www.cdc.gov/maso/policy/releasingdata.pdf
What is data release?
• Data release: Dissemination of data either for public use or
through an ad hoc request that results in the data steward no
longer controlling the data.
What is the purpose of a governance policy?
• The purpose of CDC’s data release/sharing policy is to ensure
that (1) CDC routinely provides data to its partners for
appropriate public health purposes and (2) all data are
released and/or shared as soon as feasible without
compromising privacy concerns, federal and state
confidentiality concerns, proprietary interests, national security
interests, or law enforcement activities.
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Governance Policy Components
Authority to release data
• Statutory language
• Agency rule
Define when a release review is required
• What types of users
• What types of files
Ensure that a public process is followed
Describe who reviews each application
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Data Release Tasks
Establishing the process
•
•
•
•
Develop or approve data release policies and procedures
Adds operational detail to authority provided in statute and rule
Input into design of data use applications and agreements
Develop committee governance policies
• Conflict of interest rules – personal and organizational
• Establish transparency standard for the Committee’s work, e.g. public
comment on submitted applications or documenting disposition of data
use requests
Reviewing data use applications
• Read applicant submissions
• Discuss and recommend
• Maintain confidentiality about specific research design
13
Release Review Body Scope
Release review bodies consider specific requests:
•
•
•
•
Whether the use is consistent with purpose of APCD
Whether claims data can answer the study question
Whether the applicant is qualified to manage this type of data
Whether the applicant has appropriate privacy and security
protections
In Maine:
• Whether the requested data reveals the identity of a particular
provider
None of the states:
• State agency use
• Accuracy of data interpretation
14
Release Review Structure
Should there be a release review body?
If so, Workgroup input is needed on the following:
Responsibility for appointing members
How membership is determined
Constructing safeguards around:
• personal conflicts of interest
• organizational conflicts of interest
Roles of advisory body vs a governing body
Ensuring transparency
15
Next Steps
Timeline for preliminary recommendations
Feedback Request
Next meeting: November 4, Freeman Building, 2-5 PM
Adjourn
16
Appendices
17
APCD Data Release Nationally
Statewide APCD Law
CT
NY
WA*
WV
Collecting Data
MN
RI
VA*
TN
CO
Releasing Data
17 states
UT
ME
13 states
5 states
MA
NH
KS
MD
3 States: Internal state projects only
OR
VT
*Mixed mandatory/voluntary model
On hold
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Who Can Have What Types of Data?
Identified
Public Facing
Reports
De-identified
State Agencies
CO, MA, ME, NH
CO, MA, ME, NH
CO, MA, NH
Payers, Providers
CO, MA, ME, NH
CO, MA, ME, NH
CO, MA, NH
Researchers
CO, MA,ME, NH
CO, MA, ME, NH
CO, MA, NH
Other
CO, MA,ME, NH
CO, MA, ME, NH
CO
Bolded means that the request requires data release advisory committee review.
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Release Advisory Committee Members
Colorado
Reason to convene
Maine
Limited Data
Request
Data has
named
providers
Financial
data
APCD Administrator
1
2
2
State Agency or Payer
1
2
2
Academic researchers
1
Health Care Providers/
Practitioners
3
>1
Nonprofit data quality
organization
1
1
Commercial Health
Plans
2
Consumers
1
Massachusetts
New Hampshire
Non-state agency,
non-treatment use
Privacy review
Members include:
Other
1 (advocacy)
1
2
>1
>1
1
>1
1
>1
2 (unaffiliated)
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