How To Use An Apcd

Transcription

1 All-Payers Claims Database Workgroup Meeting Summary October 14, 2014, OLF Building B144, 2:00-5:00PM MAD Draft 10/16/14 APCD Workgroup Members Present: Thompson Aderinkoni, RetraceHealth; Laurie Breyer- Kropuenske, Minnesota Department of Administration; John Chandler, Hennepin County Medical Center; Kathryn Correia, HealthEast Healthcare System; Nancy Garrett, Minnesota Health Care Safety Net Coalition; Roger Kathol, Cartesian Solutions, Inc.; Susan Knudson, Health Partners; Nathan Moracco, Minnesota Department of Human Services; Jim Naessens, Mayo Clinic College of Medicine; Diane Rydrych, Minnesota Department of Health, Health Policy Division; Mark Sonneborn, Minnesota Health Association Not present: Justin Bell, American Heart Association; Bryan Dowd, University of Minnesota School of Public Health; Larry Lee, Blue Cross Blue Shield of Minnesota; Michael Oakes, University of Minnesota School of Public Health; Britta Orr, Local Public Health Association; Minnesota Department of Health: Stefan Gildemeister, Kevin Edwards, Chelsea Georgesen Facilitators: Linda Green, Freeman Healthcare; Kris Van Amber, Management Analysis and Development (MAD) Welcome and introductions Kris welcomed the workgroup and visitors to the fourth APCD workgroup meeting and introduced Linda Green (Freedman Healthcare). The workgroup introduced themselves and their organizations. The general format for this meeting will be large group conversation. Agenda Linda presented the meeting s agenda. The intent for the meeting is to move forward with the discussion on governance issues, review recommendations that have been created to date, an overview, and discuss data release governance. Senator Tony Lourey introduced himself as one of the legislators that was present in the passing of the statute that created the APCD. Senator Lourey said that he is looking forward to recommendations from this group and what they can bring the legislature in terms of best practices for using data to improve the provision of health care to children and families. Review recommendations to date Linda reviewed the workgroup recommendations to date around data use and policy. Perspectives diverge on how uses will be framed. The workgroup was interested in looking into

2 data privacy and the tradeoff between having identifiable and therefore auditable data and protecting individuals. Linda highlighted the results on the Data Quality webinar. Discussion: Linda asked the group if the summaries given represent the sense of the workgroup and whether they wished to offer the legislature guidance regarding increasing health care price transparency and broader public access to the data. There was not consensus that access to data would be required to result in a public report. Some data could be used for internal evaluation and reporting and not be required to report publicly. Data would need to be at a higher standard for public reporting. Unique identifiers and potential uses: At this point, the data does not have this level of detail, which limits the types of research for which the APCD can be used. This workgroup has not reached consensus on increasing the number of identifiers. The process of encryption and other protections has yet to be discussed. Data could be considered differently, or tiered, for private or public use with different expectations and standards related to quality and public good. There was some, yet not complete, consensus around this. o One example of private use is the RARE campaign, which evaluates hospitals and compares them to other hospitals. To what degree future uses of this sort could access the data remains to be discussed. o Type of access would be low to high, based on aggregation level and transparency. The group diverged on who could have access to the data. Limited access to data elements use for the public was one solution. o Those for open, public data access said equal availability, regardless of credentials, education or geographic location was important. Not all data is sensitive, especially without identifiers. o Also important is confidentiality and the protection of private information. Some data is very sensitive and could potentially hurt individuals or providers if disclosed and/or misused. Possibility exists for several uses: o Log in to a website and conduct ad hoc queries o Request queries from MDH o MDH provides spreadsheet with requested fields o MDH conducts analyses upon request The database, as it exists today, needs increased validation, but MDH seems more interested in modifications and future uses for the database. There was some consensus on having an advisory board that monitored quality and completeness.

3 Data quality has been used to describe the following, which should be distinguished: o The quality of the data elements in the database Includes completeness, timeliness, and o The quality of methodology in research that uses the data o The quality of health care delivery that the data is measuring The data quality webinar was appreciated by workgroup members, but members would like information specific to the Minnesota APCD, including completeness and timeliness of data, whether pharmacy data is included, and if information could be pared by other levels, such as location, that could potentially identify an individual or provider. Data release governance Linda reviewed the legislative question about data release governance and the questions the group has around data release. Linda also highlighted the CDC definition of data release and purpose of the governance policy and asked the group if they fit the definition and purpose of data release and governance policy for the group. Discussion: The term data release connotes complete loss of control over data and other inaccurate connotations and was requested to be referred to from here forward as data access request. Access is a request to get data from someone through a defined process. Release means anyone can access a website that s been deemed safe for public consumption. Linda reviewed what release reviewers do and the scope of the review body and asked for group input on the release review structure. After access is requested, there would still be guideposts on how to use the data. MDH answers to the legislature regarding data use. o It would be up to the legislature to determine whether uses by MDH, not currently authorized, would be subject to the same governance as other requests. o Other APCDs have legislative authority to allow access to data to other state agencies with data use agreement to protect data but do not have to go through the entire data release review process. For use outside MDH, there would be structure for use, including data use agreements. The group diverged on whether there should be monitoring of methodology or evaluation of final reports that use the database. Those in favor argued that it protects healthcare providers and other stakeholders from damage that comes from poor or risky methodology. o The group could assess the level of rigor necessary for public and/or private activities. Those against regulating methodology argued that it may be inappropriate for one group to define good and bad research and that healthcare providers and other research can use the data to rebut damaging research findings.

4 o Sometimes the quality of data elements and methodology can be high, but the underlying theory is flawed. Colorado reviews whether data access requests support public good and Triple Aim goals. o Staff can review and approve data access requests if they meet certain criteria. o Gray areas are referred to committee. Massachusetts has three strands for approval using a matrix, and considers private use of data to improve treatment or care coordination in public interest. Whether use is in public interest is important. How does that work with private uses? Suggestions for Minnesota APCD: There could be criteria for staff to review, with a couple dry runs overseen by a committee, similar to Colorado. This saves committee time. The data use agreement and contract would address stewardship 1 in terms of requirements that need to be met, guarding against identification, or leaking. The group discussed three types of groups that would be part of data governance. Potential exists for conflict of interest at the first two levels. Advisory group works on high level policy, future uses and principles. o This is currently the role of the legislature. o In Colorado, this group had the final decision but strove for consensus. o This group may be composed of similar people as the APCD workgroup, though some workgroup members also identified with the other two levels. Governance group/committee controls access in circumstances that are less certain or involve higher risk than meeting primary requirements. o This group could work through details of data stewardship and oversee quality. o This group may also oversee what is and is not appropriate for each tier of use. Technical workgroup oversees the quality of the data and processes data access requests. o This group could also be more broadly defined as providing technical assistance to the advisory group. o This group could also approve data access requests for public data and possibly methodology. Members that should be included in advisory, governance and/or technical groups: Some states indicate in statute which people should be in such groups. Types of members (not present) to include: o Representatives from local measurement o Representatives of transparency and consumers o The employer group o Technology vendors that do data analytics Members reflect potential users of data, so this may present a conflict of interest. 1 Stewardship is defined as the administrator of the database and responsible for securing and allowing access to the database

5 o In practice, groups tend to be self-policing or even recuse themselves. The group diverged on whether high level advisory/governance bodies should be publicprivate partnerships. At this point, public-private partnerships do not review state work or methodologies. Senator Lourey commented that the legislature is very protective of health information. Minnesota has the most restrictive laws in the country. Part of the tension around governance is who would the group be advising? The legislature is unlikely to give up oversight of the APCD in the near future. While bold recommendations are welcome, the legislature is interested in consensus on parameters that help move forward and think long term. The appetite in the legislature for the addition of identifiers to the APCD is low. Senator Lourey liked the tiered approach to data access. Lingering questions: How to determine membership? How to deal with conflict of interest? Difference between advisory and governing body? How do we balance transparency and private use? What IT infrastructure would be needed facilitate a tiered approach to data access? One way to approach areas of divergence may be to concentrate on what exists now, set short term parameters and brainstorm a long-term vision or goals for the APCD to aspire to. Opportunity for public comment No one from the public offered comment. Next steps Linda thanked the workgroup for their insight. MDH would like to circulate drafts of preliminary recommendations to the group in the next few weeks and get feedback. Kris will send questions for the members to answer regarding their experience as a workgroup member. The November meeting will look at sustainability and responses to the above questions. The December meeting will focus on going through MDH s draft report in detail. Please refer to the MDH website, for meeting dates and materials. Public comments may be submitted to Lisa Hermanson at lisa.hermanson@state.mn.us. The next meeting will be Tuesday, November 4, 2014, 2:00-5:00, OLF Building B144? Adjourn