Ellen Andrews, PhDFamilies USAJanuary 23, 2014

The Power of Data – APCDs and why consumer advocates should care

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

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

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

www.cohealthdata.org

www.cohealthdata.org

http://www.nhhealthcost.org

NH hospital price variation

Source: Price Variations in NH Hospitals, NH Insurance Dept., April 2012

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

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

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

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,• Convene and engage advocates• Engage powerful interests • Insist on transparency – who is using what data

for what

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

ResourcesThe 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