Hello, AEA365 community! Liz DiLuzio here, Lead Curator of the blog. In honor of Pinktober this year, we’re bringing to you a rare second post of the day.
I have been writing this blog post in my head for three years. The topic balances my professional and personal lives, taking me out of my comfort zone. I have come to the realization that it is time to put pen to paper.
I am Dr. Beverly Peters and I write this post today, not as a faculty member in American University’s Measurement and Evaluation Program, but as a woman personally affected by breast cancer. My experiences the past three years provide Lessons Learned and Hot Tips.
Lesson 1: Monitoring efforts are only as good as data collection instruments, and data analysis processes. I got yearly mammograms. My mammogram four years ago was not suspicious; and the test a year later found a nonpalpable tumor. The data collection instrument was insufficient to detect a problem in 2018; a year later that same instrument and the technician were astute enough to identify cancer. The creation of valid, reliable data collection instruments is as important as data analysis processes.
Lesson 2: Centering evaluation questions around the visions of project collaborators, invested community members, and rights holders is critical. I remember sitting in my breast surgeon’s office discussing my diagnosis three years ago. A team of caregivers presented data on a whiteboard. I sat in silence, and then turned to the head of surgical oncology, and said, “You are asking the wrong questions of your data.” The data I wanted was available, but it had not been presented to me originally—because my caregivers incorrectly anticipated the knowledge I needed to finalize treatment decisions. Not everyone will question data and caregivers; we must center the purpose of the project on the vision of collaborators, invested community members, and rights holders. We should never assume that we know the questions partners need answered.
Lesson 3: Evaluation designs influence findings and outcomes. When my treatment plan recently changed to include another therapy, I asked my oncologist why this change was only recommended now. The first clinical trials showed no impact of this particular treatment, because of how the population was sampled. Breast cancer includes many diseases, with different tumor types. Recent clinical trials including only those with my diagnosis showed the treatment’s effectiveness. We must take care in how we design an evaluation, so we do not inadvertently influence results.
Lesson 4: Centering equitable approaches is critical in evaluation. I’m keenly aware of my privileges: An employer who supported me; good health insurance; a stellar medical team; and family and community that carried me through my journey. Stark inequalities characterize breast cancer diagnosis, treatment, and outcomes. Centering equitable evaluation practices is crucial to identifying, and ultimately addressing, inequality.
I’m critical of the cursory reference to breast cancer October brings, and the profits made by corporations selling pink items. I thus leave you with two hot tips this so-called Pinktober:
Tip 1: Breast cancer is a difficult, sometimes lonely, journey, changing your life’s path. Some will be in adjuvant treatment for a decade or more; and some will unfortunately be terminal. This month, please reach out to someone impacted by breast cancer. We do not need you to say anything insightful. “I am thinking of you” will suffice.
Tip 2: If you want to support those impacted, don’t purchase pink items that increase corporate profits. Rather, donate to entities supporting research, survivors, or those in treatment. Better yet, donate to organizations addressing breast cancer inequities.
If you have additional Lessons Learned and Hot Tips, I invite you to share them in the Comments section below. Thank you for reading.
Do you have questions, concerns, kudos, or content to extend this aea365 contribution? Please add them in the comments section for this post on the aea365 webpage so that we may enrich our community of practice. Would you like to submit an aea365 Tip? Please send a note of interest to aea365@eval.org . aea365 is sponsored by the American Evaluation Association and provides a Tip-a-Day by and for evaluators. The views and opinions expressed on the AEA365 blog are solely those of the original authors and other contributors. These views and opinions do not necessarily represent those of the American Evaluation Association, and/or any/all contributors to this site.
Bev, thank you for writing this. As I’ve gotten to know you both professionally and personal, I better understand and appreciated the use of data and narrative ( treatment plans). It made me smile. It made me think. My story is different, but it was filled with statistics. My mastectomy would have been different if my wife hadn’t done a lot of reading and said to my surgeon- isn’t there another option….I took the other option.
Anyway…I caved this weekend on buying something pink. I needed a hat and there it was. It fit perfectly. It reminds me that I made it through something hard. I am strong.
I look forward to more blogs. Again, thanks for sharing your story.
Bev, your evaluations and analysis of your situation is excellent. I am amazed at your intelligence and ability to cope with this dreadful disease.
I do hope you continue in good health and thinking of you.
Sylvia Wolin
Brilliantly expressed!