eRecord-Research Town Hall Meeting Follow-UpMay 18, 2011

Agenda

I. Introductions

II. Overview of eRecord-Research Project

I. Goal

II. Scope

III. Organization

IV. Working Groups

III. Workplan

IV. Discussion

Goal of this project

• Identify specific approaches to utilizing healthcare information to improve support for biomedical research at URMC

Goal of this project

• Identify specific approaches to utilizing healthcare information to improve support for biomedical research at URMC

Goal of this project

• Identify specific approaches to utilizing healthcare information to improve support for biomedical research at URMC

Goal of this project

• Identify specific approaches to utilizing healthcare information to improve support for biomedical research at URMC

Goal of this project

• Identify specific approaches to utilizing healthcare information to improve support for biomedical research at URMC

Project Scope

• Temporary effort

• End product: •Recommendations

•To URMC leadership

•Regarding policies, procedures, workflows, system enhancements,…

• Intended to support biomedical research

Organization

Steering Committee

Working Group APopulation-Based/HSR/

CER Studies

Working Group BPrivacy and Recruitment

Issues

Working Group CResearch Logistics and

Process Issues

Executive Committee

Steering Committee

Working Group A:

T. Fogg, W. DiGrazio, M. Casale, L. Glance

Working Group B:

E. Rubinstein, D. Healy, K. Featherly, A. Dozier

Working Group C:

K. Jensen, A. Tatro, L. Saubermann, B. Graves, M. Keefer

Roles and Responsibilities

• CTSI Leads - Organize WG deliberations

• eRecord Leads – supply system, technology and workflow expertise

• Faculty Leads - Advocate researcher perspectives

• WG members – supply on-the-ground knowledge of needs and desires; ideas for system, policy and workflow improvements

Working Group A

Focus: Population-based/HSR/CER StudiesSuggested topics:• Natural language data capture?• Will cpt codes be associated with episodes of care?• Uploading existing databases of lab and clinical data; limitations• Data dictionary – will there be an interface with CMR; interface with

secondary data• Ongoing databases; linking with other data collection efforts• Interface to create secondary databases• Data query and analysis capability at end-user level• Linking our EMR to those of other centers?• How will info be shared with providers not using EPIC?• Communication with research partners also using EPIC• Integrated data repository• Transition to ICD10• i2b2 and honest broker approach

Working Group B

Focus: Privacy and Recruitment IssuesSuggested topics:• Institutional capacity for identifying eligible subjects? Tech support• Monitors – segmenting data to support confidentiality• Automatic right to exclude oneself from research• Protecting information about research participation• Supplemental documentation of consent process• Can patient indicate interest in research• Reference point for patient identification – one box vs two for aliases• Description of trial in system;• What is patient assenting to? How much PHI is shared?• How are research results blinded?• Patient control over their information; diagnoses; research information• When will research info be captured in EMR vs research record• Release of information – patient control – id of research and clinical data –

limiting subsets• HIPAA compliance• Universal consent process

Working Group C

Focus: Research Logistics and Process IssuesSuggested topics:• Who maintains the information about ongoing clinical studies?• Eligibility for multiple studies; competition, conflicts• Safety trigger alerts to research team• Identifying discrete data relevant to researcher interests• Error catching mechanisms• Access to EMR for research coordinators? Process for getting access?

Limits to access?• Research procedures – accessible to whom through EMR?• How are research-specific procedures identified?• Are research results shared with other researchers?• Links to local data? Such as lab data• Where within Best Practice Alerts will research-related info be shown –

i.e. with other clinical Best Practice Alerts?• Facilitating access for research coordinators

Workplan

What WhoRecruit additional WG members as appropriate WGs

Refine Working Group scope WGs

Describe desired endpoints WGs

Align desired endpoints across Working Groups WGs, collab.

Gap analysis WGs

Preliminary recommendations WGs

Align recommendations across Working Groups WGs, collab.

Vet recommendations with URMC leadership SC

eRecord-Research Listserv

eRecord_Research@lists.rochester.edu

Sign up here:

https://lists.rochester.edu/

click on “e-mail lists”, find eRecord_Research, and click “subscribe”

What are desired endpoints?

1. Begin with a “wish list”• I want to be able to …• The systems needs the capability to …• I’d like a report that looks like …• I need data to support _________ analyses

…

2. Review wish lists and produce a list of precisely articulated endpoints

Aligning Endpoints Across Working Groups1. Given two proposed endpoints…

• Are they the same?• Do they overlap? • Are they complementary?• Are they inconsistent?• Are they mutually exclusive?

2. Discuss and resolve inconsistencies

3. Prioritize

Gap Analysis

Current State Proposed Change

Desired State

… … …

… … …

… … …

… … …

Developing Recommendations