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Workshop Agenda and Summary of Presentations

Hilton Washington DC/Silver Spring
Silver Spring, MD
May 26-27, 2005

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TABLE OF CONTENTS

Workshop Objectives:

  1. To describe the current knowledge base provided by ongoing registries, surveys, and research studies on the incidence/prevalence of acute cardiovascular events and the clinical management and patient outcomes following these events.
  2. To determine and address the need for population-based prospective data on the incidence and prevalence of acute cardiovascular events, short- and long-term clinical management patterns, and patient outcomes following these events.
  3. To suggest possible study designs, including potential opportunities for using and linking existing data sources.

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Day 1

8:30 am Welcome, introduction, charge to group

Question 1:

What are the current data needs concerning the incidence and prevalence of acute CV events and the short-and long-term medical practice patterns, quality of care, and health outcomes following these events?

8:45-11:00

Early Morning Session: Presentations describing current knowledge about the incidence and prevalence, medical practice patterns, quality of care, and patient outcomes for each of the 4 proposed cardiovascular (CV) events (sudden cardiac arrest, acute coronary syndromes, stroke, and congestive heart failure) to include:

  • Public health burden of the disease
  • Existence of established standards of care (such as national practice guidelines, performance measures, and quality initiatives) for short- and long-term disease management
  • Current knowledge about the incidence and prevalence, medical practice patterns, quality of care, and patient outcomes of the 4 CV events
  • Existing surveillance systems and cohort studies that collect these data
    • What data do they provide?
    • What are their limitations?
  • Gaps in present knowledge

Moderator: Dr. Robertson

8:45 am Sudden Cardiac Arrest -- Dr. Ornato

9:15 am Acute Coronary Syndromes -- Dr. Krumholz

9:45 am BREAK

10:00 am Stroke -- Dr. Howard

10:30 am Heart Failure -- Dr. Ofili

11:00-12:15

Late Morning Session: Presentations on federally-funded registries/ surveillance/ quality improvement measurement systems focusing on:

  • Design/Infrastructure
  • Strengths and limitations
  • Lessons learned
  • Opportunity to partner or piggyback to address data needs in CV incidence/prevalence, care and outcomes
  • Value as a model for new studies to address data needs in CV incidence/prevalence, care and outcomes

Moderator: Dr. Robertson

11:00 am National Electronic Disease Surveillance System (CDC) -- Dr. Broome

11:15 am Paul Coverdell Stroke Registry (CDC) -- Dr. Zheng

11:30 am Agency for Healthcare Research and Quality (AHRQ) -- Dr. Burstin

11:45 am Center for Medicare & Medical Services (CMS) -- Dr. Salive

12:00 noon National Ambulatory Medical Care Survey (NCHS) -- Dr. Sisk

12:15 am LUNCH

1:30-5:00

Afternoon Session: Presentations on health care delivery systems and other large surveillance programs and data system focusing on:

  • Design/Infrastructure
  • Strengths and limitations
  • Lessons learned
  • Opportunity to partner or piggyback to address data needs in CV
  • Value as a model for new studies to address data needs in CV incidence/prevalence, care and outcomes

Moderator: Dr. Burke

1:30 pm Health care delivery systems and/or databases

2:15 pm Other Surveillance Systems/Registries:

3:15 pm BREAK

3:30 pm Studies assessing clinical management patterns and/or patient outcome for:

4:15 pm Other operational issues to be considered

  • * Recruitment/data collection -- Dr. Goldberg
    - Obstacles to accessing in-and outpatient medical records
    - HIPAA, consent, and confidentiality issues
    - Events adjudication
  • * Data management -- Dr. Rosamond
    - Infrastructure/coordination
    - Promoting use of data
    - Ethical issues (e.g., informing patients of sub-optimal clinical management)

5:00-6:00 BREAK

Question 2

What are appropriate study designs (including potential for linking existing data-gathering infrastructures vs. starting de novo) to address the identified data needs?

6:00-9:00

Evening Session (with working dinner): Participants will divide into small working groups to address the above question from each of three perspectives:

  1. Out of hospital surveillance,
  2. Hospital surveillance, and
  3. Assessment of quality of care and outcomes.

6:00 pm Small groups meet separately to prepare responses to Question 2

9:00 pm Adjourn Day 1

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Day 2

8:00 am Housekeeping/announcements

8:15-11:20

Morning Session: The 3 small groups from Day 1 Evening Session will present their responses to Question 2, after which the full group will discuss and prepare its final recommendations.

Moderator: Dr. Luepker

8:15 am Hospital Surveillance group presentation -- Dr. Roger

8:45 am Out of Hospital Surveillance group presentation -- Dr. Ornato

9:15 am Assessment of Quality of Care and Outcomes group presentation -- Dr. Goff

9:45 am BREAK

10:00 am Full group to consider small group responses to Question 2 and prepare final
recommendations

11:00 am Wrap-up/Final announcements/Next steps?

11:20 am Adjourn


Post-Adjournment Meeting

11:20 am-12:30 pm Co-chairs, Day 2 Morning Session Moderator, Small Group Leaders, and
NHLBI/ CDC representatives meet to address workshop report

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