Developing the Registry of Patient Registries (Text Version)

Slide Presentation from the AHRQ 2011 Annual Conference

Slide presentation from the AHRQ 2011 conference.

Developing the Registry of Patient Registries

Slide Presentation from the AHRQ 2011 Annual Conference

On September 19, 2011, Dan Levy made this presentation at the 2011 Annual Conference. Select to access the PowerPoint® presentation (1.5 MB). Plugin Software Help.

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Developing the Registry of Patient Registries

September 19, 2011
Dan Levy—Chief Technology Officer
Outcome Science, Inc

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Primary Objective

Task 1—Develop the Registry of Patient Registries.
- Engage stakeholders in the design and development of the RoPR, a searchable central listing of patient registries in the U.S. that is compatible with ClinicalTrials.gov.

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Topics

Goals of the RoPR System.
Stakeholder engagement process.
Implementation plans for the system.

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RoPR Goals

Provide a voluntary, searchable, central listing of patient registries in the U.S.
Encourage and facilitate the use of common data elements and definitions in similar conditions (to improve opportunities for sharing, comparing, and linkage) through the listing and searching of such elements.
Provide a central repository of searchable summary results.
Offer researchers a search tool to locate existing data to request for use in new studies (secondary analyses, linkage studies).
Serve as a recruitment tool for researchers and patients interested in participating in patient registries.

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Stakeholder Engagement Process

Use-Centered Design: Design a system that is responsive to user needs.

Approach:

Involve users throughout all stages of the development lifecycle: formulating the requirements, designing the system, and building the system.
Involve users seeking to perform various tasks, such as:
- Developing registries.
- Using data from registries.
- Evaluating registries.
- Reviewing manuscripts based on registry data.
- Participating in a registry.

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Stakeholder Groups

Patients/consumers.
Physicians, hospitals, other health care providers, and physician associations.
Payers, including private health plans, employers, and public insurance programs (e.g., Medicare, State Medicaid, State Children's Health Insurance Program).
Funding agencies (e.g., NIH).
Government regulatory and public health agencies, (e.g., FDA, CDC, state health departments).
Researchers.
Industry, including pharmaceutical and device manufacturers.
Journal editors.

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Stakeholder Participation (>320)

Topic	Web Conferences	In-person Meetings
General Requirements	Nov. 18, 23, 30	May 3
Use Cases	December 9, 10, 14	Jan. 13
Policies and Procedures		Jan. 13, 18
Data Elements	January 4, 6	Jan. 13 Feb. 15 March 7, 17, 24
Search and Search Results	February 3, 8, 10
Standardized Outcome Measures and Data Elements		Feb. 15 March 7, 17, 24 April 11

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RoPR Development Lifecycle

Requirements:
1. Actor Catalog.
2. Use Case Catalog.
3. Detailed Use Cases.
4. System Requirements.
5. Data Elements.
Design:
1. System Design.
2. Usability Testing.
3. Test Plan.
4. Test Scripts.
5. Traceability Matrix.
Build:
1. Develop.
2. Test.
3. UAT.
4. User Documentation.
5. Deploy.

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Actors

Funding Agency.
Government Regulatory.
Industry Representative.
Journal Editor.
Patient/Consumer.
Payer.
Pharmacist.
Healthcare Provider.
Physician Association.
Public Health Agency.
Researcher.
Hospital.
Social Worker.
Patient Advocacy Group.
Legal Representative.
Registry Administrator.
Registry Reviewer.

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Actor Catalog

Actor ID	Name	Description	Role
RoPR AC1	Funding Agency	Responsible for providing funding in the form of grants, bonds, research grants, scholarships, or through some other financing option. * Funding agencies exist at the federal and state level.	Registry Seeker
RoPR AC2	Government Regulatory	Responsible for providing overall jurisdiction responsibility over the legislation (acts and regulations) for a given sector. * Regulatory agencies exist at the federal and state level.	Registry Seeker
RoPR AC3	Healthcare Provider	Responsible for providing all aspects of medical care, treatment, diagnosis, counseling, or referral of a patient.	Registry Holder Registry Seeker
RoPR AC4	Hospital	Responsible for providing patient treatment by specialized staff and equipment.	Registry Holder Registry Seeker
RoPR AC5	Industry Representative	Responsible for representing processes and procedures that specific industry currently has in place and the changes that will be made.	Registry Holder Registry Seeker
RoPR AC6	Journal Editor	Responsible for reviewing and editing submissions to a professional journal for a professional association.	Registry Seeker
RoPR AC7	Legal Representative	Responsible for representing the legal rights of patients and providers.	Registry Seeker
RoPR AC8	Patient Advocacy Group	Responsible for ensuring that ongoing projects and those being considered for funding will directly impact patients' lives, improving delivery of care and support for tertiary care. Also responsible to analyze cost containment and act as a proponent for best practices, advocating better protection for patients and providers for the greater good of society.	Registry Holder Registry Seeker

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Roles

Roles	Purpose	Functions	Actors
Registry Seeker	Users seeking information about registries for a wide variety of purposes such as identifying registries for patient enrollment, finding existing registries, and collaborating with registry holders.	Search View Results Listings Link to Registry Details	Healthcare Provider, Patient, Researcher, Payer, Government Regulatory, Journal Editor, Funding Agency, Industry Representative, Pharmacist, Physician Association, Public Health Agency, Hospital, Social Worker, Patient Advocacy Group, Legal Representative
Registry Holder	Users interested in posting a registry to the RoPR database for the purpose of sharing information about their work, recruiting patients, and collaborating with others.	Enter Registry Details	Industry Representative, Healthcare Provider, Physician Association, Public Health Agency, Researcher, Hospital, Patient Advocacy Group
Administrator	Users tasked with managing RoPR accounts, and ensuring registry profiles are kept up to date.	Manage Accounts Monitor Registries	Registry Administrator
Reviewer	Users tasked with reviewing posted registries.	Review/Approve Posted Registries	Registry Reviewer

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Use Cases

Registry Holder Account Management.
Account Management.
Registry Profile Update Administration.
Approve Registry Profile.
Create a Registry Profile.
Modify a Registry Profile.
Registry Profile Management.
Submit Registry Profiles.
Delete a Registry Profile.
Search for Information.
Search for Participation.
Search for Collaboration.
Evaluating Registry-Based Studies.
Search to Validate Funding Opportunity.
Notifications.
Data Audit.
Search to Verify Commitment.
Search for Progress Report.
Search to Validate Payment.
Search for Legal Information.
Search for Redundancy.
Search for Duplication.
Search for Best Practices.
ClinicalTrials.gov Integration.

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Use Case—Registry Seeker Workflow

Search.
Results Listing.
Registry Details.

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Use Case—Registry Holder Workflow

Upload.
Posted Registry.
Web Entry.
Registry Holder Login.

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Use Case Catalog

UC ID	Name	Description	Functional Area	Actor (s)
RoPR UC1	Registry Holder Account Management	A Registry Holder shall be able to request a new account, and manage the personal profile information for that account.	Administration	All Registry Holders: Healthcare Provider, Hospital, Industry Representative, Patient Advocacy Group, Physician Association, Public Health Agency, Researcher
RoPR UC2	Account Management	A Registry Administrator shall be able to create, modify and delete RoPR accounts, as well as assign permissions to accounts, so as to allow users to create, modify and delete registries.	Administration	Registry Administrator
RoPR UC3	Registry Profile Update Administration	A Registry Administrator shall be able to view all registry profiles that require updating, so that their owners can be contacted if the recommended time period for updating is near or past.	Administration	Registry Administrator
RoPR UC4	Approve Registry Profile	A Registry Reviewer shall be able to approve a registry profile to ensure data integrity before it is released to search.	Review	Registry Reviewer
RoPR UC5	Create a Registry Profile	A Registry Holder shall be able to create a registry profile so as to post their registry data.	Registration	All Registry Holders: Healthcare Provider, Hospital, Industry Representative, Patient Advocacy Group, Physician Association, Public Health Agency, Researcher
RoPR UC6	Modify a Registry Profile	A Registry Holder shall be able to modify a registry profile when changes to their registry data occur.	Registration	All Registry Holders: Healthcare Provider, Hospital, Industry Representative, Patient Advocacy Group, Physician Association, Public Health Agency, Researcher
RoPR UC7	Registry Profile Management	A Registry Holder shall be able to view and manage all registry profiles that they have created or own.	Registration	All Registry Holders: Healthcare Provider, Hospital, Industry Representative, Patient Advocacy Group, Physician Association, Public Health Agency, Researcher

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Detailed Use Case

UC ID.
Basic Flow.
Alternate Flow.
Exceptions.

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Detailed Use Case—Search

Use Case ID	RoPR UC10
Use Case Name	Search for Information
Description/Goal	A Registry Seeker that is a potential registry developer shall be able to search for registries that are relevant to a specific disease, condition, procedure and/or symptom to understand what types of registries exist, their purposes, and what information is being collected.
Functional Area	Search
Actor(s)	Patient, Pharmacist, Healthcare Provider, Physician Association, Public Health Agency, Hospital, Social Worker, Patient Advocacy Group
Pre-conditions	N/A
Post-conditions	N/A
Frequency of Use	Frequent

RoPR UC10
Basic Flow	Description	Exceptions (E) & Alternate Flows (AF)
Step 1	Registry Seeker accesses RoPR	E1
Step 2	Registry Seeker navigates to Basic Search page	E2 AF 2.1, AF 2.2
Step 3	Registry Seeker enters in search criteria relevant to the disease or condition	E5, E6
Step 4	Summary results are displayed with links to more detailed information	AF4.1, AF4.2, AF4.3, AF4.4
Step 5	Registry Seeker clicks on a result	E7
Step 6	Registry Seeker contacts the registry holder	E10 AF6.1

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Search UC—Alternate Flows

Alternate Flow 2.1	Description	Exceptions (E) & Alternate Flows (AF)
Step 2.1.1	Registry Seeker navigates to Advanced Search page	E3
Step 2.1.2	Registry Seeker enters in text based search criteria, as well as selecting other detailed options from within required data elements in registry profiles	N/A
Alternate Flow 2.2	Description	Exceptions (E) & Alternate Flows (AF)
Step 2.2.1	Registry Seeker navigates to Topic Search page	E4
Step 2.2.2	Registry Seeker browses through registry profile summaries grouped by Topic, then listed by sub-topic	N/A
Step 2.2.3	Registry Seeker browses through registry profile summaries grouped by Topic, then listed alphabetically	N/A

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Search UC—Exceptions

Exceptions	Description
E1	RoPR Web site unavailable
E2	Basic Search page unavailable
E3	Advanced Search page unavailable
E4	Topic Search page unavailable
E5	Registry Seeker is unable to enter in detailed search criteria
E6	Registry Seeker is unable to enter basic search criteria
E7	Clicking on a link displays a blank page
E8	Registry Seeker is unable to download results
E9	Registry Seeker is unable to download results in a usable format
E10	The listed contact information is incorrect

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RoPR—System Components

Search.
Registration.
Admin.
Review.

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Requirements Breakdown (104)

Search:
- All Search:
  - Basic Search.
  - Advanced Search.
  - Topic Sear.
  - Registration.
- Search Results:
  - Results Display.
  - Detailed Registry Profile.
  - Notifications.
Registration:
- Registry Profile Data Entry:
  - Create.
  - Update.
  - Registry Profile Upload.
Administration:
- Account Create.
- Account Update.
Review:
- Registry Profile Review.

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Requirements—Registration (High)

Title	Req ID	UC ID	Requirement Name	Requirement Description	Priority (H-M-L)
Registry Profile Management 01	R29	UC1	Account Login	As a Registry Holder, I want to be able to log in to my account.	High
Registry Profile Management 02	R30	UC1	Account Logout	As a Registry Holder, I want to be able to log out of my account.	High
Registry Profile Management 03	R31	UC5, UC7	Registry Profile Modification Access	As a Registry Holder, I want to be able to create and manage registry profiles tied to my user account.	High
Registry Profile Management 04	R32	UC5	In-Progress Registry Profile	As a Registry Holder, I want to be able to save a partially completed registry profile.	High
Registry Profile Management 05	R33	UC6	In-Progress Registry Profile Editing	As a Registry Holder, I want to be able to edit a partially completed registry profile at any time.	High
Registry Profile Management 06	R34	UC9	In-Progress Registry Profile Deletion	As a Registry Holder, I want to be able to delete a partially completed profile at any time.	High
Registry Profile Management 09	R37	UC5-6	Registry Profile Business Rules	As a Registry Holder, I want business rules applied automatically to my inputs in the registry profile, to ensure integrity of the registry profile record.	High
Registry Profile Management 15	R43	UC5-6	Registry Profile UID	As a Registry Holder, I want each of my registry profiles to have a unique and uneditable identifier so that I have a way to find and link to it.	High
Registry Profile Management 17	R45	UC5-6	Registry Required Data	As a Registry Holder, I want to be able to see what data elements are required vs. optional to complete my registry profile. (see Data Elements document for complete list of required data elements)	High
Registry Profile Management 18	R46	UC5-6	Registry Distinct Data	As a Registry Holder, I want distinct language used to label registry specific data elements, so that I can easily differentiate them from ClinicalTrials.gov study data elements.	High
Registry Profile Management 23	R51	UC8	Registry Profile Submission	As a Registry Holder, I want to be able to submit my registry profile for approval, once all required data elements are completed. (see Data Elements document for complete list of required data elements)	High
Registry Profile Management 24	R52	UC5-6	Derivative Registry Capture	As a Registry Holder, I want to be able to input a derivative study or studies into my registry profile.	High
Registry Profile Management 25	R53	UC5-6	Registry Quality Metrics	As a Registry Holder, I want to be able to input key registry quality assurance procedures into my registry profile.	High
Registry Profile Management 26	R54	UC5-6	Progress Report Capture	As a Registry Holder, I want to be able to input progress report data into my registry profile.	High
Registry Profile Update 03	R58	UC8	Updated Registry Approval	As a Registry Holder, I want to be able to submit my updated registry profile for approval, so the update will appear in search results.	High

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Requirements—Search (High)

Title	Req ID	UC ID	Requirement Name	Requirement Description	Priority (H-M-L)
All Search Types 01	R59	UC10-14, UC17-23	Search Access	As a Registry Seeker, I want to be able to search all approved registry profiles.	High
All Search Types 03	R61	UC10-14, UC17-23	Navigation	As a Registry Seeker, I want to be able to navigate between search options using a tabular interface.	High
Basic Search 01	R62	UC10-14, UC17-23	Basic Text Search	As a Registry Seeker, I want to input free text to search and find specific registry profiles.	High
Advanced Search 01	R64	UC10-14, UC17-23	Advanced Search Data Points	As a Registry Seeker, I want to be able to search using data elements which are required in all registry profiles. (see Data Elements document for definition of required data elements)	High
Search Results 01	R77	UC10-14, UC17-23	Search Return Summary	As a Registry Seeker, I want my search to return a summary list of results.	High
Detailed Registry Profile 02	R91	UC10-14, UC17-23	System URLs	As a Registry Seeker, I want to be able to share links to detailed registry information with others.	High
Detailed Registry Profile 03	R92	UC10-14, UC17-23	Registry Profile Data	As a Registry Seeker, I want the detailed registry profile to contain all data in the registry profile. (see Data Elements document for data elements definitions)	High
Detailed Registry Profile 08	R97	UC10-14, UC17-23	Detailed Profile Data Elements	As a Registry Seeker, I want the detailed registry profile to show me data elements that are unique to patient registries.	High
Detailed Registry Profile 09	R98	UC10-14, UC17-23	Detailed Profile Registry Version	As a Registry Seeker, I want the detailed registry profile to show me the registry version.	High
Detailed Registry Profile 10	R99	UC10-14, UC17-23	Detailed Profile Registry Geography	As a Registry Seeker, I want the detailed registry profile to show me the registry geography.	High
Detailed Registry Profile 11	R100	UC10-14, UC17-23	Contact Registry Holder	As a Registry Seeker, I want the detailed registry profile to identify the interest and availability of a registry holder to be contacted.	High

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RoPR Data Element Sections

Registry Description.
Registry Classification and Purpose.
Sponsor and Conditions of Access.
Registry Design.
Eligibility.
Conditions, Exposures, and Keywords.
Common Data Element Groups by Condition.
Status.
Quality Procedures.
Progress Report.
Related Information.

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1. Registry Description

Registry Description This section contains Registry identification and description information.
Data Element Name	Format	Required / Optional	Description
Registry Title	TEXT	Required	Registry title intended for the lay public.
Registry Version	TEXT	Optional	Registry version identifier.
Date of Entry	DATE	Required (auto-populated)	Original date of Registry data entry into the RoPR.
Date of Update	DATE	Required (auto-populated)	Date of update of any Registry information.
Brief Description	TEXT	Required	Short description of the Registry intended for the lay public.
Long Description	TEXT	Optional	Extended description of the Registry, including more technical information (as compared to the Brief Description).
Registry Geography	SELECT Single Institution/Practice, State, Regional, National, Global	Optional	Identify geographic area of Registry providers. Select one.
Registry ID	TEXT	Required	Unique identification assigned to the Registry by the sponsoring organization.
Secondary ID(s)	TEXT	Optional	Other identification numbers assigned to the Registry.
Derivative Study ID(s)	TEXT	Optional	Study or studies derived from the Registry.

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2. Registry Classification and Purpose

2. Registry Classification and Purpose This section contains information about the type of Registry and intended purpose.
Data Element Name	Format	Required/Optional	Description
Registry Classification	MULTI-SELECT Disease/Disorder/Condition Service, Procedure Service, Encounter (office) Service, Hospitalization Product, Drug Product, Device Product, Biologic Pregnancy Vaccine Transplant Tumor Other (TEXT)	Required	Type of Registry. Select all that apply. Enter Other if none or additional Classifications apply.
Registry Purpose	MULTI-SELECT Natural History of Disease Clinical Effectiveness Cost Effectiveness Comparative Effectiveness Safety or Harm Quality Improvement Clinical Practice Assessment Public Health Surveillance Payment/Certification Other (TEXT)	Required	Purpose of Registry. Select all that apply. Enter Other if none or additional Purposes apply.

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3. Sponsor and Conditions of Access

3. Sponsor and Conditions of Access This section contains information about the sponsor, collaborators, conditions of access, and related contact information.
Data Element Name	Format	Required/Optional	Description
Sponsor	TEXT	Required	Name of primary organization that oversees implementation of the Registry.
Collaborators	TEXT	Optional	Other organizations (if any) providing support, including funding, design, implementation, data analysis, and reporting.
Responsible Party (name, title, E-mail, phone, organization)	TEXT	Required	The sponsor of the Registry or the Principal Investigator of the Registry if so designated by the sponsor.
Interest in being contacted?	SELECT Yes No	Required	Identify if the sponsor is interested in being contacted for reasons listed below.
Reasons for being contacted?	MULTI-SELECT Data Access More Information Collaboration Participation, Investigator Participation, Participant Other (TEXT)	Required	Identify sponsor's reasons for being contacted. Enter Other if none or additional Reasons apply.
Contact Person (name, title, E-mail, phone, organization)	TEXT	Required	The primary contact person, as designated by the sponsor, able to respond to interested parties.
Link to Conditions of Access	TEXT (URL)	Optional	A link, including http://, to a document describing conditions of access required by sponsor.
Uploaded file containing Conditions of Access	FILE	Optional	An uploaded document describing conditions of access required by sponsor.

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9. Quality Procedures

9. Quality Procedures
This section contains information about the quality procedures being conducted for the described Registry.

Data Element Name

Format

Required/Optional

Description

Registry Procedures

MULTI-SELECT

Quality plan.
Data checks are employed using range and consistency checks.
Data is compared to medical record or other external data sources for accuracy, completeness, or representativeness.
Data encoding dictionary with clear definitions.
Number of participants or participant years needed to demonstrate an effect has been specified.
There is a plan to address missing data.
There is a statistical analysis plan.

Optional

Identify all quality procedures implemented as part of the Registry.

Other

MULTI-SELECT

3rd party certifications.
On-site audit performed.
External use of data for research.
Other (TEXT).

Optional

Identify other factors that contribute to the quality of the Registry.

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10. Progress Report

10. Progress Report This section describes progress information associated with the Registry and includes information about the growth of the Registry and any relevant references to available progress reports.
Data Element Name	Format	Required/Optional	Description
Date of Progress Update	DATE	Required (auto-populated)	Date that this progress report section is updated.
Progress Report Summary	TEXT	Required	Summary of all relevant progress report information. May include summary of interim reports, annual reports, and/or other related Registry progress reports.
Link to Progress Report	TEXT (URL)	Optional	Link to relevant Registry progress report(s).
Progress Report	FILE	Optional	Upload of relevant Registry progress report(s).
Number of Participants in Registry	NUMBER	Required	Progress data identifying the current number of participants in the Registry.
Length of Follow-up	TEXT	Optional	Progress data identifying the length of follow-up data currently available within the Registry.

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Integrating with ClinicalTrials.gov

Stakeholders wish to leverage ClinicalTrials.gov (awareness, existing investment, infrastructure and capabilities).
- In use since 2000.
- Over 100,000 studies listed.
Modify ClinicalTrials.gov to accommodate patient registries.
- Add new �Patient Registry' study type.
- Add ~6 new patient registry specific data elements to �Design' section.
Introduce links between ClinicalTrials.gov and to RoPR.
- Link to RoPR record Registration System (RRS).
- Link to RoPR Public Search Web Site.
- Link between ClinicalTrials.gov record (NCT#) and RoPR record (RoPR#).

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Integration Pathways

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Wireframes

Registering a Registry.
Searching.

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ClinicalTrials.gov—Patient Registry

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ClinicalTrials.gov—link to RoPR Data Entry

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RoPR Data Entry

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RoPR—Registry Description

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RoPR—Registry Classification and Purpose

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RoPR—Preview Registry Profile

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RoPR—Save and Release

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Searching—Basic Search

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Searching—Advanced Search

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Searching—Topic Search

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Searching—Search Results

Image: A screen shot of ROPR is shown.

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Information about the RoPR Project

The Agency for Healthcare Research and Quality (AHRQ) Effective Health Care (EHC) Program is pleased to announce that the following draft report is now available and open for comment on the EHC Web site until October 10, 2011.
To view and comment on these reports, please visit: http://www.effectivehealthcare.ahrq.gov/index.cfm/research-available-for-comment/comment-draft-reports/?pageaction=displayDraftCommentForm&topicid=311&productID=777.
For more information.
- By E-mail: ropr@outcome.com.
- By phone: Willet Hossfeld at 202-775-0546.

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Thank you!

Current as of December 2011

Internet Citation:

Developing the Registry of Patient Registries. Slide Presentation from the AHRQ 2011 Annual Conference (Text Version). December 2011. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/about/annualconf11/berliner_gliklich_hyatt_levy/levy.htm

Current as of March 2012

Internet Citation: Developing the Registry of Patient Registries (Text Version): Slide Presentation from the AHRQ 2011 Annual Conference. March 2012. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/events/conference/2011/levy/index.html