SWOG Member Profile - Frequently Asked Questions (FAQ)

As we strive for diversity, equity, and inclusion (DEI) at SWOG, it is essential that we look at ourselves in our multiple dimensions. Membership profiles that include both self-reported information and data captured by our membership department will give us a clearer picture of who we are in terms of demography, geography, expertise, practice setting, and more. As SWOG plans for the future, identifying gaps in these areas will help us move toward greater representativeness in cancer research and care. Further, we aim to reflect principles of diversity, equity, and inclusion into our membership, our work, and our trials, so that SWOG is known as an organization where everyone is seen and heard.

We will define DEI in its broadest and most comprehensive sense. Race, ethnicity, sex, sexual orientation, gender identity, and age are certainly included. But we will also include areas of concentration, primary professional role, cancer type being studied/treated, practice setting, and other characteristics, embedding the four cornerstones of DEI at SWOG:

  • Intention (guiding results to our desired goals)
  • Intersection (considering the relationship between characteristics)
  • Integration (leveraging the relationship of this project with other projects and how we work)
  • Iteration (continuously improving)

We expect to better understand the current state of membership, leadership, and committees with respect to the traditional demographic data like race, ethnicity, sex, and age. Having that baseline will allow us to establish improvement goals and collaboratively develop and implement plans to achieve them.

In addition, we would like to be able to answer questions like:

  • What proportion of practitioners practice in the community?
  • How many new members have joined us in the past year?
  • How many early-stage investigators do we have by committee? Joining our committee meetings?
  • Who has an interest in health finance/economics? Older adults? AYA?
  • Who practices in a VA setting?
  • How many accessible rooms should we book for the in-person meeting?
  • What is the change in [characteristic] versus three years ago at the Group level? At the Committee level?

We have included data where eventually we want to understand the status and then collaboratively improve through our DEI efforts, aligning intent with results.

We initially sought out authoritative sources for both questions and answers and prepared a draft for stakeholder review. Late in this process, we discovered that ASCO was executing a similar initiative, and they were willing to share their approach with us. ASCO questions and responses were almost identical to our draft apart from merging race and ethnicity into one question. We made a strategic decision that aligning with ASCO was the right approach. Beyond ASCO, we leveraged the Northwestern Alumni Identity Survey for event accessibility needs. For non-demographic elements (roles, interests, and areas of focus), we used a mash-up of legacy SWOG, NCCN, and ASCO values guided and enhanced by SWOG member input.

Rationale for age, sex, gender identity, and race and ethnicity:

Align SWOG results with those of similar organizations.

Rationale for veteran status:

Enable networking and membership in the VA Committee.

Rationale for accessibility needs:

Optimize meeting experience for those with accessibility needs.

Rationale for geographic work setting:

Align SWOG results with those of similar organizations.

Rationale for zip code:

Align SWOG results with those of similar organizations. Zip codes will allow for more granular analysis.

Rationale for determining if parent or guardian graduated from a 4 year program:

Provide support for those whose parent or guardian did not graduate from a 4 year program.

Rationale for cancer type studied/treated:

Ensure diversity of cancer context across SWOG.

Rationale for areas of concentration:

Ensure membership reflects current and future needs for expertise within SWOG and kindle networking and collaboration.

Rationale for practice setting:

Ensure diversity across SWOG.

Historically, we collected a small portion of the data. However, we reviewed the historical values being collected and determined that, in most cases, they did not align with what we need. In addition, the data had not been updated and needed to be refreshed.

We based our guiding principles on the NIH Publication Measuring Sex, Gender Identity, and Sexual Orientation Guiding Principles which we felt aligned with our intent across all characteristics.

  • Privacy – Use data in a manner that benefits respondents and respects their privacy and confidentiality. Research findings should be shared with respondents to ensure the benefit, and data should be shared only under rigorous privacy and confidentiality standards.
  • Parsimony – Collect only necessary data, gathered in pursuit of a specific and well-defined goal.
  • Precision – Use precise terminology that reflects the complex and multidimensional nature of DEI data.
  • Inclusiveness – People deserve to be counted. Everyone should be able to see themselves and their identities represented in surveys and other data collection instruments.
  • Autonomy – Respect identity and autonomy. Data collection must allow respondents to self-identify whenever possible.

Access to sensitive data will be carefully controlled and in accordance with SWOG and CRAB privacy policies.

Your name, affiliation, email address, SWOG role, SWOG committee memberships, and phone number are currently viewable by all logged-in SWOG members (note: not available to the general public). Additional profile details that will be viewable in Phase 3 by all logged in members include areas of concentration, types of cancers studied/treated, and primary professional role.

The following information will not be visible to other logged in members: age, race, ethnicity, accessibility needs for events, sexual orientation, gender identity, and veteran status. These data elements will be accessible only by the SWOG vice chair of diversity, equity, inclusion, and professional integrity or as part of aggregate reports on SWOG committees or subgroups within SWOG.

Users' anonymity and privacy are paramount. Users will be assigned an anonymous ID upon first access of the profile site. The generated ID will be stored in a separate database with strict access controls, in accordance with SWOG and CRAB protocols. Similarly, sensitive data such as age, race, ethnicity, accessibility needs for events, sexual orientation, gender identity, and veteran status are treated as total summations, and not specific to any one User ID. In consultation with data security experts at SWOG's Statistics and Data Management Center (SDMC), we will ensure that we have controls in place to mitigate risks of exposing any single user's data either directly or indirectly.

This data will be used intentionally to demonstrate the intersectionality of SWOG's membership. Any sensitive data will be treated securely with restricted access under the direction of the Chairs' offices and the Vice Chair of DEI. For non-sensitive data, we hope this extended membership data effort will also provide a foundation for broader networking across SWOG.

The selected DEI elements reflect diversity dimensions where we plan to have an effect and make changes through our DEI efforts. The current state of SWOG at the leadership, protocol, committee or other levels will be assessed relative to benchmarks for similar entities outside of SWOG or internal goals set by SWOG. We recognize that benchmarks using similar cohorts will be better than using population level (e.g., census) data to establish goals. We also recognize that benchmarks are guideposts and imprecise.

Changes will require time and potentially new approaches to recruiting, selection, onboarding, inclusion, and professional development efforts. We are committed to collaboratively creating strategies and tactics that will improve diversity, equity, inclusion, and, ultimately, belonging.

No. We will not establish quotas. We do plan to monitor changes across time and collaborate across stakeholders with intentionality to achieve our goals. We will plan to look at benchmarking against diversity measures in other cooperative groups to provide guidance for development of goals and suggestions for diversity approaches.

All SWOG members and staff, especially leaders, are encouraged to complete their profile.

Our ability to achieve our collective goals and vision and progress with intentionality is powered by data like the profile. The more members complete their profile, the more accurate and valuable our data will be. However, completion is totally voluntary and a “prefer not to answer” option is available for many questions.

First time users will be provided a link to start their profile . Users are registered using their ID.me profile or CTEP ID (note: that option is being eliminated by CTEP; new users should use ID.me). These identifiers are only used to check for existing SWOG membership but NOT saved to the user's profile.

Once you have logged into SWOG.org using your CTEP-IAM credentials or using ID.me, you can find "Update My Profile" under the person icon (Account icon) in the top right corner (click or touch the icon).

Alternatively, you can go to Member Resources from the top menu (banner) and choose "Member Directory and My Profile" followed by "Update My Profile."

Wherever possible, you will enter your own data. SWOG Membership will enter data where they have better visibility or data that requires validation. You will be advised by Membership if supporting documentation is needed (select questions only).

As of Phase 2, you will be able to view and update your self-reported data any time or ask Membership to update your membership data. Campaigns to update data will be semi-annual.

As of Phase 2, you will be able to see your full profile (self-reported and Membership-entered values). You can also contact Membership to update those fields that Membership enters (listed above) by emailing them at member@swog.org.

On each page of your profile, data you enter is stored once when you click “Save and Submit.” You will have an opportunity to view and then edit any of your responses from the Review/Summary page. If you would like to update your profile data, clicking on the “I Need to Change Something” and a page showing your current data will be shown.

After you click the Save and Submit button from that page, your profile is complete and your data is saved. You will see a page thanking you for your time and effort and providing information on getting help with your profile.

You will see the Summary/Review page again and have an opportunity to make changes when you next log into your profile.

Changes to profile data can be made at any time.

Changes to profile data can be made from Update Your Profile at any time.

Questions or concerns regarding access to and/or usage of the DEI Profile site can be sent to profiles@swog.org.

If you have revisions to data that is managed by Membership and cannot be updated by you via self-service or want to update your email address or contact information, please send an email to profiles@swog.org.

The project has three planned phases.

Phase 1 (spring 2024)

Includes basic, self-reported data that you manage yourself:

  • Age
  • Ethnicity
  • Race
  • Veteran status
  • Event accessibility needs
  • Geographic work setting (urban, rural, suburban)
  • US resident including zip code
  • Practicing physician
  • Whether parent or guardian graduated from a 4 year program
Phase 2 (summer-fall 2024)

Adds additional data entered by you to the Phase 1 profile:

  • Sex
  • Gender identity
  • Sexual orientation
  • Pronouns
  • Contact information including social media (e.g., Twitter handle)
  • International values where applicable

You will be able to view and update the data above as needed.

In addition, you will be able to see and request updates or first-time entry for data values which Membership records on your behalf:

  • SWOG Role (including term end dates where applicable)
  • Primary Professional Role
  • NCTN Research, Research Support Committees
  • NCORP Committee
  • NCTN Research Organ Site Subcommittees (chairs only)
  • SWOG “Division” or “Branch”
  • NCORP Research Committees (primary and other)
  • Research Support Committees (primary and other)
  • Other Committees

Finally, standard, aggregated reporting will be provided to the DEI Vice Chair and shared with members and leadership.

Phase 3 (fall-winter 2024)

Adds the ability for you to selectively network and connect with other members with similar interests or to build a diverse team. Advanced reporting will be provided to the DEI Vice Chair and shared with members and leadership. Example: areas of concentration/interest.

We welcome your feedback and questions. Send an email to: profiles@SWOG.org.

The project team included a cross-section of SWOG spanning various disciplines. They included:

  • Rick Bangs
  • Connie Barnes
  • Allison Caban-Holt
  • Mike LeBlanc
  • Cathy Rankin
  • Patricia Robinson
  • Angela Smith
  • Dana Sparks
  • Leslie Weissenstein
  • Monica Yee
  • Frank DeSanto
  • Amanda Boyea
  • Morgan Cox
  • CRAB Applications Development Team
  • Jamie Sundstrom
  • Committee Chair
  • DEI Committee
  • Cara Laubach
  • Mariana Chavez-MacGregor
  • Recruitment and Retention Committee (RRC) including Diversity, Inclusion, and Belonging Strategic Working Group (DIBS)
  • Patient Advocate Committee (PAC)
  • Charles Blanke
  • Don Dizon
  • Connie Szczepanek