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Evolution of national data registries



Presentation for the Pediatric Heart Institute Research Conference at Vanderbilt University Medical Center.

Presentation for the Pediatric Heart Institute Research Conference at Vanderbilt University Medical Center.



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  • In the last two years or so, our clinical staff has felt the effects of the increased emphasis on data capture. So much so, that I fear the word “data” has become a new four letter word, or at least according to our surgery scheduler.
  • This slide is often used in the ACC’s presentations.
  • Well, who are we talking about? While I could talk about the various stakeholders, and the list would go on and on, I have chosen a few for the purposes of this presentation. The entities we will review have been key to what we know as P4P and Public Reporting.
  • Concluded that it is not acceptable for patients to be harmed by the healthcare system, a system that promises “to do no harm”. It further concluded that more often than not errors occur because of faulty processes not bad people and established a national focus on safety by raising performance standards and mandatory reporting.
  • Asthma care measures for pediatric hospitals is the first to roll out.
  • Hospital payment is tied to performance.
  • Again we see the theme of pediatric asthma care. We also see here the link that NQF has with setting these national measures.
  • This is a voluntary effort, like the STS and the ACC.
  • NQF was incorporated in a report issued by the President’s Advisory Commission on Consumer Protection and Quality in the Health Care industry as part of an integrated national quality improvement agenda.
  • With the implementation of the public reporting initiatives by CMS and JCAHO, there was a unified voice from the medical community with grave concerns regarding discoverability among other medical-legal dilemmas. The PSQI was signed into law to address these fears. What they saw was that these fears hampered the data that was reported.

Evolution of national data registries Presentation Transcript

  • 1. Evolution of National Data RegistriesWhere have we been and where are we going? Becky Grando DBA, CardioAccess
  • 2. Pediatric Heart Institute Research ConferenceThe speaker of the activity has no financial relationships to disclose
  • 3. Goals• To paint a broader picture of national database evolution in the hopes of helping our clinical staff understand why there seems to be a sudden flurry of activity related to data capture for the purposes of quality improvement.
  • 4. “Science tells us what we can do; Guidelines what we should do; & Registries what we are actually doing.”www.acc.org
  • 5. What entities exist at the national level and who are they?
  • 6. AHRQ (Agency for Healthcare Research and Quality)• Established 1989• Lead Federal agency for research on health care quality, costs, outcomes, and patient safety
  • 7. Society of Thoracic Surgeons Registries• 1990• Clinical data registries developed for the purposes of quality improvement• Gold standard for cardiac and thoracic programs in this country with benchmarking capability.• Adult CV, Congenital Cardiac, and General Thoracic
  • 8. ACC National Cardiovascular Data Registry (NCDR)• 1997• Clinical data registries developed for the purposes of quality improvement• Gold standard for cardiology programs in this country with benchmarking capability.• CathPCI, ICD, CARE, ACTION, IC3-Office, IMPACT
  • 9. Institute of Medicine (IOM)• 1970• Serves in an advisory capacity to the nation on health topics• 1999 Published To Err Is Human
  • 10. National Quality Forum (NQF)• 1999• Sets national priorities and goals for performance improvement• Endorses national consensus standards for P4P
  • 11. HealthGrades• 1999• Leading organization for healthcare ratings. Profiles hospitals, nursing homes, and physicians
  • 12. LeapFrog Group• 2000• Voluntary program that aims to leverage and mobilize employer purchasing power through recognizing and rewarding top health industry performers for safety, quality, and customer value.• Encourages transparency
  • 13. Centers for Medicare & Medicaid Services (CMS)• Launched Hospital Compare: P4P• Currently aimed at mostly adult measures
  • 14. Joint Commission (JCAHO)• Accredits and certifies health care organizations and programs in the U.S.• Nationally recognized as a symbol of quality and performance.• Public reporting: currently aimed at mostly adult measures• NPSG (National Patient Safety Goals)
  • 15. Identification and Implementation of Core MeasuresWith critical infrastructure and operational processes in place as a result of earlier activities,implementation of standardized metrics (i.e., core measures) became possible. Toward thisend, the Joint Commission developed a process for the identification, testing, specificationand implementation of core performance measures. To date, five core performance measuresets have been identified for hospitals. These include acute myocardial infarction, heartfailure, pneumonia, pregnancy and related conditions, and surgical infection prevention.ICU, children’s asthma care and hospital-based inpatient-psychiatric servicesmeasures are among the next measure sets scheduled to follow. The processutilized to determine these measure sets relies on working with a content-specific technicalexpert panel, stakeholder input, rigorous testing and the development of precise technicalspecifications. All Joint Commission measures are submitted to the National Quality Forum(NQF) for review and potential endorsement. To date, all Joint Commission core measureshave been endorsed by the NQF. www.jointcommission.org
  • 16. Child Health Corporation of America (CHCA)• 1986• A collaboration of non-competing hospitals formed for the purposes of transparency and improvement.• Responsible for the Pediatric Health Information System (PHIS)
  • 17. • PHIS is the most comprehensive comparative pediatric database in the nation.• Uses: decision making evaluation of peer practices to reduce variations in care and improve outcomes (quality).https://sharepoint.chca.com/CHCAForums/AboutCHCA
  • 18. Chain of Events• NQF incorporated as a result of the 1998 report on quality in the healthcare industry. (May 1999)• IOM publishes To Err is Human (Nov 1999)• CMS begins to launch public reporting efforts• JCAHO begins performance measure development and establishes patient safety goals as a condition of accreditation.
  • 19. • Leapfrog takes the IOM report to heart and begins market reinforcement for quality and safety for their employees.• Private insurance companies hop aboard the public reporting bandwagon.• STS and ACC use their national databases to set the standard for care in Cardiac Surgery and Cardiology.• Patient Safety and Quality Improvement Act is approved by Congress (2005)
  • 20. No wonder most healthcare providers feel like they are in the land of Oz!
  • 21. What’s going on in ourbackyard, i.e. the PHI???
  • 22. • Purchased database software via a grant from the Children’s Foundation Development Fund.• Participating actively in the STS database with our first harvest in 2007.• Participating in the ACC IMPACT pilot group• Developing standardized measures for internal quality assurance and process improvement.• Developing platforms for research and data transparency among our internal key stakeholders.• Collaborations with key departments for important research, resource allocation, and administrative needs.
  • 23. Pediatric Heart Institute Business andQuality Improvement Operations •Clinical •Financial Outcomes Analysis •PM & I •Operations •Safety •Marketing Registries STS CHSS Medipac IMPACT Periop JCCHD PHIS PHTS Fetal Echo CV Anesthesia Third party payer and Clinical Research public reporting •P4P •Tricuspid Atresia •Rankings •PACS •Website Data •PHTS •AAOCA Need for Research Team
  • 24. What is the value?Objective versus Anecdoctal decision making
  • 25. Recent Honors• Top 25 in U.S. News and World Report (Hospital) 23rd in Pediatric Heart Care.• Distinguished as COE by Aetna and URN (PHI)• 15 in Parent Magazine Survey (Hospital)• 1 of 7 in the nation by Leapfrog for excellence in patient safety (Hospital)
  • 26. “If we could first know where weare, and wither we are tending, wecould then better judge what to do, and how to do it.” ~ Abraham Lincoln
  • 27. Website links• http://www.cms.hhs.gov/center/quality.asp• www.qualityforum.org/• www.sts.org• www.acc.org• www.jointcommission.org• www.leapfroggroup.org• www.ahrq.gov• www.chca.com