The American Board of Ophthalmology (ABO) collects data from candidates and diplomates through normal business operations as an independent certifying board of practicing ophthalmologists.
Sources that provide data, consisting of personally identifiable information (PII), anticipate that the data are protected with respect to confidentiality and are being used to inform operational purposes. ABO values the privacy and sensitive nature of the individual and program-level data being collected.
At times, external entities may request candidate and diplomate data, including PII, for operational or research purposes. ABO supports research that furthers one or more of the following objectives:
- to evaluate the effectiveness of its programs and activities to support ABO’s mission
- to examine the relationships between certification and physician education, clinical practice, and career-long improvement
- to contribute meaningfully to the literature about physician competence
- to promote psychometric integrity and best practices
The objective of this Data Collection, Use, and Sharing Policy is to address principles and procedures regarding the collection, use, and sharing of candidate and diplomate data.
Collection of Candidate and Diplomate Data
ABO will include in its data collection approach questions about gender identity, race, first language, and ethnicity. The purpose of collecting data about gender identity, race, first language, and ethnicity is to minimize bias in ABO assessments, programs, and policies. All questions about gender identity, race, first language, and ethnicity are optional, are presented alphabetically, provide the opportunity to select more than one choice, and include open-ended choices.
Management of Candidate and Diplomate Data:
ABO is committed to the secure use and management of candidate and diplomate data. Users who establish a portal account agree to the ABO’s terms of service. These users grant permission for the ABO to collect and store certain types of PII necessary to facilitate board certification programs, services, and communications. This information may be stored indefinitely, in accordance with the ABO’s file retention policies. ABO uses reasonable privacy and security controls to protect the confidentiality and integrity of candidate and diplomate data.
ABO is not obligated to delete PII at the request of a candidate or diplomate. ABO does not sell any PII about any candidate or diplomate.
General Principles Regarding Data Sharing
ABO does not provide data to commercial entities, such as pharmaceutical interest groups or manufacturers of medical devices.
If a limited data analysis is requested, that request will be reviewed to determine if it aligns with ABO’s mission and this Data Collection, Use, and Sharing Policy and then subsequently shared with the senior ABO staff representative in the relevant ABO department. The department will make the decision as to its ability to respond to the request. If extensive work is involved, depending on the current workload of ABO staff, ABO may decline the request or charge a fee to the data requestor commensurate with the time and effort involved. Such fees are at the discretion of the board and will be communicated at the time of proposal acceptance.
Procedures for ABO Collaborations with External Entities Requiring Disclosure of Candidate and Diplomate Data:
At times, ABO may choose to collaborate with an external entity to conduct analyses utilizing ABO candidate and diplomate data, which may include PII. Collaborations, for the most part, will be initiated by ABO, although ABO staff may make the decision to collaborate as a result of a request from an outside party.
Requests for candidate and diplomate data should be submitted via e-mail to [Sarah Schnabel, PhD, Director of Psychometrics and Assessment at firstname.lastname@example.org], and should include:
- Name and contact information of the principal investigator
- Names of co-authors/co-investigators
- Principal investigator’s institutional affiliation
- Curriculum vita of principal investigator
- Description of the proposed study, including:
- Research question(s)
- Proposed methodology
- Data being requested (e.g., specific data elements and time period requested)
- Proposed outlet for study results (e.g., publication; presentation)
- Whether IRB approval is required and, if so, what type of approval (exempt, expedited, full) and through which institution
- Whether the research project will be independent or collaborative (with ABO staff or directors as co-investigators)
ABO’s internal research team will evaluate all proposals using the following evaluation criteria:
Importance [Rating scale: 0- none; 1- low; 2- moderate; 3- high]
- How important is the research question to the ABO’s mission?
- How important is the research question to key stakeholders of the ABO (e.g., the public, diplomates, or other organizations that promote protection of the public through ophthalmic training or education)?
- Are the data being requested available?
- If yes, are the data in a format that is easy to export and analyze?
- Is the recipient able to protect the confidentiality and security of the data?
- Are the requested data, or any information necessary to explain the data, protected or confidential?
- Can the data analysis be performed within a reasonable period of time?
- Is the research question clear and measurable?
- Is the study designed in a way that meets best practices for methodological rigor?
Value of Collaboration, if relevant
- Is the time commitment of the collaborating ABO staff/board members commensurate with the value of the research?
- Are the funding requirements and responsibilities clearly described?
- What is contemporary opinion about board certification and/or certifying boards? How have recent relevant publications been received?
- Has the lead researcher published similar work? Does s/he have any potential biases?
- What is the credibility of the targeted journal? Is its primary audience an ABO stakeholder?
- What positive/negative inferences or relationships could be suggested by the study? What kinds of reactions could we envision from our stakeholders?
- Would the study’s publication help build the value proposition for board certification?
- Are the suggested author(s) the best representatives to conduct the proposed study?
All recipients must use data received from ABO solely for purposes of the research proposal. No secondary or corollary uses of candidate and diplomate data are permitted without ABO’s express written consent.
ABO’s internal research team will track all requests for the use of candidate and diplomate data for research purposes to identify trends or themes that might inform dissemination of ABO operational data to the ophthalmic community. Trends will be periodically reported to ABO senior leadership for review (see Appendix A).
ABO does not release its mailing lists to external entities for research purposes. If the project is approved by ABO, a decision will be made regarding whether data analyses will be conducted internally by ABO staff or if data sharing is appropriate. If the latter, then a Data Sharing Agreement will be established with the external entity. The external entity must also agree to abide by all relevant ABO policies and guidance.
Ownership of Data and Intellectual Property Considerations
All data shared by ABO shall remain the sole property of ABO. Data analysis conducted by an external entity will be provided to ABO as specified in any Data Sharing Agreement. The external entity must agree that no data provided by ABO will be shared with other investigators, sites, or external entities without the express written permission of ABO. For any Research or other Systematic Investigations conducted with an external entity, careful attention to ownership of the data collected and/or analyzed must be clearly articulated and memorialized in the corresponding Data Sharing Agreement.
Intellectual property considerations will also be determined on a case-by-case basis and memorialized in the corresponding Data Sharing Agreement.
Terms regarding data retention and destruction will be detailed in all agreements with the external entity. Unless specified otherwise in a contract, the final set of analyses and code should be saved by the lead author for five years following closure of the study and/or publication, whichever comes last. If the analyses result in publication(s), copies of the final set of analyses and code for each paper should be transmitted to ABO’s internal research team for retention through a secure modality to be determined at the time of transmission.
Data Security and Confidentiality
All candidate and diplomate data shared with any external entity will be subject to mutually agreed standards designed to protect the confidentiality and security of all candidates and diplomates. ABO prefers to not share the PII of ABO candidates and diplomates. If unique identifiers must be used in the research project, then ABO’s internal research team must approve the external entity’s plan for identity masking and encryption before ABO will release any candidate and diplomate data. The external entity must allow the ABO or its designee to audit the strength of masking and encryption upon request.
ABO will require any recipient of candidate and diplomate data to implement and maintain reasonable and appropriate data security safeguards to protect the security and confidentiality of candidate and diplomate data. Data will be exchanged via a secure method approved by ABO. Data will be provided to the external entity on a timeline that takes into account the feasibility of ABO staff completing the requested data exchange without compromising their regular work. ABO may also request that updated data files be transferred to ABO from the external entity on a periodic basis.
ABO retains the right to restrict the dissemination of research results that it perceives may breach the confidentiality of the ABO, or any of the candidates or diplomates it serves.
Candidate and Diplomate Consent for Data Use and Release:
In support of this Data Collection, Use, and Sharing Policy, ABO will obtain permission from candidates and diplomates so that ABO can use individualized data, which may include disclosure to external entities:
To help analyze the effectiveness of my training program, and for the non-commercial purposes of the Accreditation Council for Graduate Medical Education (ACGME) and its Ophthalmology Review Committee, I hereby authorize ABO to release, in confidence, to the ACGME, the director of the program in which I have trained, and to the chair of the department of which the program is a part, the results of my performance on the examinations conducted by ABO. I also authorize ABO to use and disclose the data I submit to ABO and results of my performance on the ABO examination for ABO’s internal, non-commercial mission and purposes. Additionally, where permitted by law, I authorize ABO to release data, including personally identifiable information, to other external entities in accordance with ABO’s Data Collection, Use, and Sharing Policy. ABO may also disclose data when required by law.
Associated Policies and/or Guidance:
ABO Data Sharing Agreement (Template)
Appendix A. Annual Review of Requests for Use of Candidate and Diplomate Data for Research Purposes
All requests will be logged into a historical record by ABO’s internal research team and reviewed on an annual basis by the ABO to better understand the types of requests received. Requests will be categorized as to:
- Data Requestor and contact information
- Department and/or organization
- Date of request
- Type of data requested