End of WMM Recruitment

We are pleased to announce that we have completed recruitment for the What Matters Most study. Follow-up data collection is ongoing and will finish in May 2019. We are also still interviewing trial participants as well as clinicians and other stakeholders at each of our sites.

We recruited 622 women from September 2017 through February 2019. A total of 162 women have been discontinued, a number that includes many women who were deemed ineligible after recruitment.

Meeting our recruitment goal would not have been possible without the women who agreed to participate and the research teams who supported their involvement. Thank you. We are also especially grateful to our patient associates (breast cancer survivors) who helped us recruit, and our patient partners who contributed substantially to the design and implementation of the recruitment process in our monthly study team meetings.

We look forward to sharing our study results as they become available. These results will help us understand how best to help women with low incomes or little education make high-quality breast cancer treatment decisions.

Stay tuned!

Compassion in Research with Christine

By: Catherine H. Saunders

Christine getting ready to meet with patients for the Matters Most study.

Meet Christine

Christine is the youngest patient associate on our What Matters Most team. She’s also the most recent breast cancer survivor; her surgery was only two years ago. Christine is unique among our patient associates; in addition to being a cancer survivor, she is a trained researcher. She has nearly 15 years of experience working in population health research.

She brings both these identities with her to the clinic when she works with the patients who enroll in our study.

She can uniquely relate to patients’ experiences

Christine helps patients understand our study — its benefits and drawbacks — often in the very same room where she had her initial cancer surgical consultation — room 7.

“I know [...] when we see them it’s so close to the beginning. [...] Especially meeting them right before the surgical consult, which is typically what kicks everything off anyway, [...] I can remember that feeling. [...] I’ll tell the patient I was right there where you’re sitting.”

She finds the in-between moments most meaningful, things like a “knowing look” between her and a patient or a laugh about how often the women need to don pink exam gowns.

She’s also particularly attuned to their feelings

Part of doing responsible, ethical research is making it clear to potential participants that being a part of a study is completely optional. Because Christine has been in their shoes, she finds that patients are relieved when she reassures them that our study really is optional. And completely up to them. 

“If somebody is not sure if they want to do this - or they are looking uncertain [...] - I’ll say: Hey, I understand. We all understand this is a crazy time for you and you have a lot of questions. So if this doesn’t feel like the right thing for you don’t feel like you have to say yes. Take your time. We get it.”

She also knows when they might need a little extra help, like some resources. She makes great use of the study resource packet for her site, Washington University in St. Louis. She lets women know that she has personal experience with breast cancer and shares some of the resources she used.

But she’s still a scientist at heart

Christine has enjoyed working with patients as a part of the What Matters Most trial, but she’s very much looking forward to the next steps. She wants to know what we’ll find and what matters most for other women with early-stage breast cancer. And for future research.

Although, she also fears she will miss interacting with patients every week. She’s thinking about exploring other options to continue her role as a patient advocate after the trial is complete.

Christine, our participants are lucky to have you. And the patients you help as an advocate in the future will be, too.

Thanks for being such a hard-working researcher and an unwavering patient voice.

When the Patient is Also the Researcher

Ann getting ready to recruit a participant, with our research assistant Danielle Schubbe.

By: Catherine H. Saunders

Meet Ann

The What Matters Most team at The Dartmouth Institute has a special team member, Ann Bradley. Ann practiced as a nurse for more than 50 years, in various roles.

Now she has a new role. She’s an integral member of our recruitment team as a patient associate.

Ann found out she had breast cancer 23 years ago, right after returning to the Upper Valley from a family vacation in Nantucket. While she was away, her doctor’s office left a message on her answering machine. Her young son hit the red playback button as soon as they got home. He came running to tell her something wasn’t right.

“Mom, they say there’s something wrong. You have to go back to [hospital].”

Reflecting on this impersonal approach to patient communication, Ann says, “the way the news was broken to me was terrible.” Her experience inspired her to help others, both as a nurse and – now – as a patient associate on the What Matters Most team.

When the Patient is the Researcher

Ann thinks her position as a breast cancer survivor helps potential participants in our study relax and feel comfortable.

“My gray hair for one thing – helps. Also, I don’t mind saying I’ve been where you are and that was 23 years ago. And that [...] is a good thing. Often the response is, ‘and you’re still here!’”

She also intuits that – much like her – others with breast cancer are “very willing to give their time to help other women” by participating in research.

Something about Ann’s approach is working. She has the best recruitment results of anyone on our Dartmouth team!

Learning to do Research

As for the research itself, Ann says it was a steep learning curve, “I read all that I could. […] I have new respect for researchers. I realize the detail and importance of relating to other people while not putting your own biases in. It’s been instructive. I’ve learned a lot!”

Connecting the Dots

Being a breast cancer survivor is an important part of Ann’s identity.

“I do get emotional – still. It’s just a profound part of my life experience. So that never goes away. Every year, I still go in for a mammogram, and it’s like…well…what’s this going to show? And of course it never shows anything.”

And she loves bringing her experience to the job, in an effort to help other women.

“It’s great fun to work with you young kids.”

We also love working with Ann! She reminds us about why we’re doing this work and makes us smile every time she is in the office.

Ann, we think YOU matter most. Thank you for being a part of our team.

Matters Most Trial Recruitment has Started

We will begin recruitment this month for the What Matters Most trial and will continue to recruit participants through December 2018.

Website Launch

The soft launch for our website is scheduled for early February 2017!