Summer 2020 NAACCR Narrative Leave a comment

Jeannette Jackson-Thompson, MA, MSPH, PhD
Director Emeritus, Missouri Cancer Registry and Research Center

Research Associate Professor, Dept. of Health Management & Informatics, University of Missouri (MU) School of Medicine
Core Faculty, MU Institute for Data Science & Informatics

 

What NAACCR Means to Me

As readers of the NAACCR Newsletter know, the North American Association of Central Cancer Registries (NAACCR) is a professional organization that develops/promotes uniform data standards for cancer registries; provides education/training; certifies population-based; aggregates/publishes data from central cancer registries; and promotes the use of cancer surveillance data to reduce the burden of cancer in North America. But NAACCR is more than just a collaborative umbrella organization for cancer registries, governmental agencies, professional associations and private groups in North America interested in enhancing the quality and use of cancer registry data. It is an organization whose staff, Board and members willingly share knowledge, materials and ideas and reach out to embrace members in need of support, consolation and prayers. I am a 24-year NAACCR member who will never forget the many words of support I received via cards, emails, texts and phone calls or the many kindnesses that came my way – flowers, food, memorial gifts, virtual hugs, etc. – following the death of my husband of 50 years, Richard C. Thompson, PhD, on 30 June 2020.

 

A Brief Word about Richard’s Involvement with NAACCR

Having decided to become a chemist at the age of 9 (he declared he was a Brooklyn Dodgers fan at the age of 8), Richard selected the University of Chicago for his undergraduate studies. Four years after obtaining his A.B. in Chemistry (1961), he was awarded a PhD in Chemistry from the University of Maryland (1965). After one year as a post-doctoral fellow at Argonne National Laboratory and a year teaching at the Illinois Institute of Technology, Dr. Thompson joined the inorganic chemistry faculty at the University of Missouri-Columbia, where he spent the next 35 years, becoming director of graduate studies and associate chair. He retired on 31 December 2002 at which time he was granted the title of professor emeritus. To learn more about his life, go to https://www.columbiamissourian.com/obituaries/missourian_life_story/richard-thompson-a-true-scientist-had-a-passion-for-travel-and-food/article_a6aaace6-c7a8-11ea-9d2d-ff00838b6cda.html.

 

In addition to being a dedicated scientist, Richard was an avid traveler with a keen interest in American history and Native American culture. He was also a lifelong learner. His first trip after retirement in January 2003 was to accompany me to a cancer surveillance workshop in San Jose, CA. He became a regular attendee at NAACCR meetings and meetings of the Union for International Cancer Control (UICC)/World Cancer Congress (WCC). His last trip was to accompany me to the 2019 NAACCR Annual Conference in Vancouver, British Columbia.

 

My Involvement with NAACCR

I became director of the Missouri Cancer Registry (MCR; now the Missouri Cancer Registry and Research Center (MCR-ARC)) in May 1996, too late to attend the 1996 annual meeting in Minneapolis. Five MCR staff members (our registry manager, database administrator and three CTRs) did attend and brought back valuable information. From the 1997 meeting in Boston – the last meeting to which we were able to send 5 staff – to the 2019 meeting in Vancouver, I attended every annual meeting.

 

It only took one meeting for me to realize the value of attendance at annual meetings and how active participation throughout the year could benefit us. As director, I encouraged MCR staff to volunteer to serve on NAACCR committees and work groups and to submit abstracts for presentation at annual meetings. Submission of an abstract opened the door to send additional staff if funding was available. Between 1998 and 2019, 10 MCR staff gave over 50 presentations at annual meetings; had they not been presenting, 8 of the 10 would not have been able to attend the annual meeting that year. Between 2002 and 2019, 8 students and 1 post doc gave 13 presentations, none of whom would otherwise have received support. After annual conferences, presentations (oral and poster) are uploaded to our website (https://medicine.missouri.edu/centers-institutes-labs/cancer-registry-research-center/resources/presentations) and posters are displayed on MCR-ARC walls.

 

All NAACCR annual meetings have benefited attendees and, through reports made at regularly scheduled meetings, other staff and students. Over the years, follow-up contact with presenters has brought improvements to registry operations. Highlights for me and for MCR-ARC include:

 

1997 (Boston): Twenty minutes after 5 MCR staff landed at Logan Airport, the airport closed for more than 24 hours due to a snowstorm that dropped over 2 feet of snow on the city, disrupting the opening day schedule. Two staff members and I – all looking like drowned rats after walking back to the conference hotel from Charles Street (antique shops) – had our photo taken with John Young, DrPH, CTR, former director of the California Cancer Registry (1989-1995 and of NAACCR’s Cancer Surveillance and Control Program (1996-1998). This encounter subsequently led to the opportunity for MCR to acquire a customized version (Mo-CRIS) of the software system used by the University of California-Irvine (Cancer Registry Information System (CRIS) for the regional registry they operated; without this system, we would have had a great deal of difficulty meeting NPCR requirements and NAACCR standards. Throughout the 1997 meeting, I met NAACCR, agency and central cancer registry (CCR) staff and experienced the generosity and camaraderie of NAACCR members.

 

1998 (Vancouver, British Columbia): This meeting offered an opportunity to renew acquaintances and build relationships that have endured for more than 20 years. I gave my first presentation (“Collaboration and constituency building: A central cancer registry forges relationships for the 21st century”) at a NAACCR meeting. As director of MCR, I realized the importance of our staff and students being actively involved in NAACCR, not just being members of the organization and encouraged them to submit abstracts and serve on committees.

 

1999 (Chicago, IL): An MCR staff member, Iris Zachary, CTR (now Iris Zachary, PhD, MSHI, CTR and, since January, director of MCR-ARC) gave a presentation (“Moving towards the 21st century: A central registry Strives for quality”). While at the conference, I received a message from my supervisor that the Missouri Dept. of Health (now the Missouri Dept. of Health and Senior Services (DHSS)) had agreed to outsource day-to-day operations of MCR to the University of Missouri (MU) and he instructed me to draft a contract immediately and fax it to him. I knew that the Florida central registry, located at the University of Miami, operated under a contract with the Florida health department. Jill Mackinnon, PhD, CTR, then director of the Florida Cancer Data System (FCDS), generously agreed to contact the Florida Dept. of Health and a copy of their contract was faxed to me at the Palmer House. I crossed out names, inserted appropriate new names and faxed the amended contract back to the Missouri health department. Twenty-one years later, MCR is still operated as a joint endeavor of MU and DHSS, using the same one-year contract format; in 2002, all operations were outsourced to MU.

 

2001 (Miami, FL): Although MCR had been a population-based registry since 1985, we had never conducted death clearance and follow-back until 1996. We knew we didn’t meet NAACCR certification standards, so we did not submit data for certification until 2001 for 1998 data. At the 2001 meeting, we received our first NAACCR certification – silver (death certificate only cases exceeded 3 percent). “Go for the Gold” became our motto and continues to motivate us. Data for 1999 – 2017 meet the NAACCR Gold standard.

 

2009 (San Diego, CA): While walking through the exhibit hall, an MCR staff member, Mary Jane King, saw a demonstration of InstantAtlas® by GeoWise data visualization software and realized that this is what MCR-ARC needed for our website. We had been relying on data tables on DHSS’s website, but the public and many health professionals who are not epidemiologists or statisticians don’t relate as well to tables as they do to graphs, charts and maps. In addition to cancer incidence data, we now display cancer mortality data, behavioral risk factor data and other types of data important to the surveillance community (https://medicine.missouri.edu/instantAtlas/areaHealthProfile2015/atlas.html).

 

2011 (Louisville, KY): Scrolling through the photos of past conferences on the NAACCR website, I found a photo of Jim Martin (then director of the Virginia Cancer Registry) and me presenting NAACCR Student Awards (https://www.flickr.com/photos/naaccr/albums/72157626961281247/page2/). We set up the Student Award Sub-committee in 2010 under the Data Use and Research (DURC) Standing Committee. We wanted to encourage students to become involved with NAACCR (catch them young and keep them!), an idea that has been supported by the NAACCR staff and Board.

 

2016 (St. Louis, MO): For the first time ever, the annual meeting was held in Missouri! We chose St. Louis rather than Columbia for the convenience of participants and collaborative relationships with faculty at Washington University in St. Louis and St. Louis University. Plenary sessions built on our theme – “Gateway to Cancer Discoveries” – and included: Gateway to Results; … to Implementation; … to Diversity; … to Information; … to Scientific Discovery; and … to Patient Centeredness and Patient Perspectives. It was a great honor to host the annual meeting, one I will always cherish. I will also long remember the 2016 St. Louis Susan G. Komen Race for the Cure, which was held on the Saturday preceding the meeting. MCR-ARC sponsored a team; Richard and I participated in it, along with Shari Ackerman, the MCR-ARC staff member responsible for opening ceremony entertainment and a special NAACCR rate for a St. Louis Cardinals game, and Adam Bouras, a department staff member and PhD student.

2019 (Vancouver, British Columbia, Canada): This, my second NAACCR conference in Vancouver, was combined with the International Association of Cancer Registries’ (IARC’s) annual conference. It was the last trip Richard and I made together.

Closing Thoughts

This has been a year of changes, for me and for MCR-ARC. After nearly a quarter century as director of the Missouri Cancer Registry, on 1 January 2020 I became director emeritus and Iris Zachary became the director. Dr. Zachary came to MCR more than 20 years ago; we recruited her from a hospital in St. Louis to join our quality assurance unit as a certified tumor registrar (CTR). While working full time at MCR, she earned a master’s degree in health informatics and a PhD in the same field. This was the culmination of succession planning that began more than 5 years ago. I hope to continue working with Iris and other members of the MCR-ARC team – and to be an active NAACCR member – for several years to come.

 

An unplanned change was closure of the university due to COVID-19. We have had short- and long-term telecommuting policies in place for more than a decade. Thanks to NAACCR for asking if our policies could be included in a manual, I had reviewed and updated our material in January. Only one MCR-ARC staff member was not already set up to work from home (with permission of her/his supervisor) and it took our software support analyst only 3 hours to get her set up. To maintain morale and keep in touch, Iris convenes a weekly Zoom meeting with all staff. Other weekly, monthly and quarterly meetings continue as Zoom rather than in-person meetings.

 

The unplanned change with most impact on me was Richard’s death on 30 June. I will be forever grateful that he was able to come home on 27 June and (with assistance from Compassus Hospice and Integrity Home Care) to have one day (the 28th) where he could gaze around my study from his hospital bed and see the artifacts we’d collected over 50 years of marriage, then be wheeled out on our patio to smell the flowers and look at my tomato plants. My husband enjoyed a taste of 16-year-old Lagavulin less than 5 minutes before he took his last breath, never complaining and still holding my hand. He was a scientist to the end, donating his body to the School of Medicine’s Gift of Body program.

 

In addition to the support of family and friends, I have been blessed to have the support of MCR-ARC staff, NAACCR staff and Board members and NAACCR members around the country and across the border. Your support has brought me the strength to go forward, to grieve but to continue to carry out my MCR-ARC responsibilities. In time, I hope to acknowledge each of you individually. In the meantime, know that your thoughts, prayers and actions have carried me through the darkest of days and given me hope for the future.

 

Jeannette Jackson-Thompson

 

  1. 2016 NAACCR Annual Meeting (St. Louis, MO): Jeannette Jackson-Thompson presenting 1st place student oral to Aishwarua Kulkarni, Rutgers School of Public Health, New Brunswick, NJ for her presentation “Incidence of Triple Negative Breast Cancer in New Jersey, 2008-2013”
  2. 2019 NAACCR Annual Meeting (Vancouver, British Columbia, Canada): Reunion in Vancouver – Richard Thompson, Jeannette Jackson-Thompson, Angela Martin (former MCR Education Coordinator, now NAACCR trainer/project manager) and Chester Schultz, MCR-ARC Senior Statistician
  3. 2016 NAACCR Annual Meeting (St. Louis, MO): The MCR-ARC team (Shari Ackerman, Jeannette Jackson-Thompson, Richard Thompson and Adam Bouras) take a break during the Susan G. Komen Race for the Cure
  4. 2019 NAACCR Annual Meeting (Vancouver, British Columbia, Canada): Richard Thompson and Jeannette Jackson-Thompson relax by the yacht basin in downtown Vancouver.
  5. 2014 NAACCR Annual Meeting (Ottawa, Ontario, Canada): Jeannette Jackson-Thompson proposing a toast to NAACCR
  6. 8 July 2020, Columbia, MO: Flowers from NAACCR staff and Board

 

 

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