Ellen Andrews, PhD Families USA January 23, 2014

1. The Power of Data – APCDs and why consumer advocates should care Ellen Andrews, PhD Families USA January 23, 2014

2. What is an APCD? • Claims databases, merged across payers • Created by state mandate • Typically include medical, pharmacy, and dental • Eligibility and provider files • Private and public payers: • private insurers, third party administrators • Medicaid, Medicare • Ten states now operating APCDs,five more in process

3. Why does your state need one? • Data is fragmented in silos, turf battles • No clear picture, lots of fruit disclaimers • Lack of consistent, high quality, timely data is often cited as a barrier to progress • ACA reforms driving system redesign with short time lines • Reform offers a historic opportunity to create a learning system • Other states are building and using APCDs, it will be expected

4. How can it be used? Track use of health care services Evaluate performance of health care delivery system Track health disparities Evaluate efficiency of the system and providers Identify major drivers of cost trends, hot spots Assess the impact of programs and new initiatives Allows comparisons with other states Design solutions targeting problems, avoiding unintended consequences

5. www.cohealthdata.org

6. www.cohealthdata.org

7. http://www.nhhealthcost.org

8. NH hospital price variation Source: Price Variations in NH Hospitals, NH Insurance Dept., April 2012

9. Challenges reported by APCD states Constructing effective, credible governance structures Prioritizing data uses Integrating technology with current structures Sustainable funding Political, stakeholder support Clear data submission expectations Privacy and security concerns – consumer, payer

10. Recommendations Develop an independent governance structure Public education effort Consider privacy and security upfront Clear processes on submission, completeness, access to and acceptable uses of data Equalize timeline of access to data Meaningfully engage stakeholders in collaboration to develop policies and in access decisions

11. Recommendations Develop web-based, consumer portal with quality and cost tools to drive better consumer decision-making Create a public process to define reports Hire really smart analysts to mine data tracking whole health system priorities Public review and comment on all identifiable uses, track compliance, with strong penalties for violations Educate public users, including workshops

12. What advocates can do Find out where your state is Show up, get on committees, publicize, comment on draft policies Track who is driving the process, the $$$$, where the data lives Help in developing use cases, reports, portals, Conveneand engage advocates Engage powerful interests Insist on transparency – who is using what data for what

13. CT APCD consumer activities Dissemination -- Governor’s Health Care Cabinet, press Expert roundtable at Capitol, moderated by Comptroller, co-sponsored with CT’s APCD Advocate on APCD Advisory Committee • Report by CTHPP, CT Center for Patient Safety, health equity researcher • As CT developing – what needs to be included from consumer perspective

14. Resources The Power of Data: Consumer Involvement and Accountability in Development of CT’s APCD, for the CT Health Foundation, March 2013 CT Health Policy Project CT Center for Patient Safety UConn Health Disparities Institute APCD Showcase – APCD Council