Q&A: Xconomy Award Winner Nikhil Wagle on Building Patient Partnerships

[Updated 10/30/ 9:33 am ET to include news of the data release and new tweets, see below.] You only have to see a few tweets from metastatic breast cancer patients and patient groups to see how they feel about the Metastatic Breast Cancer (MBC) Project and its leader, Nikhil Wagle (pictured). The breast cancer oncologist and researcher with the Dana-Farber Cancer Institute and the Broad Institute received the 2017 Xconomy Award for Patient Partnership, for his collaborations with patients in building and growing the Project, which is collecting DNA and medical information from patients to better study the disease. On Friday, the Project publicly released its first set of data, including sequenced DNA, from more than 100 patients.

As part of his research, Wagle has been studying women with cancer that has spread beyond the breast, and has been trying to figure out why some respond so well to treatment that their tumors virtually disappear. He was studying blood and tumors samples from patients, and thought that having more patient samples, particularly from people with rare responses to treatment, could provide more answers.

Wagle also heard that the metastatic breast cancer patient community was looking for ways to encourage more research and to participate in it. Wagle says roughly a quarter of women with breast cancer see their tumors spread, and treatments that target primary breast tumors in the earlier stages of the disease tend not to work as well on tumors that have metastasized.

So in late 2014, Wagle began talking with patients and advocates, floating the idea of using a website and social media to directly engage patients. Through these discussions, the idea for the Metastatic Breast Cancer Project was developed and by October of 2015, it was launched. Leading up to the launch, Wagle worked with patients and half a dozen patient groups, consulting them on the mission and messaging, and even on details such as the pictures and text that would appear on the website.

“There was an enthusiastic response, but also a lot of caution and we got a lot of advice,” says Wagle. “We took that advice to heart.”

Patients sign up through the site, and give permission to Wagle and his team to study their saliva, blood and tumor samples, as well as their clinical information and medical records. The researchers are sequencing DNA from the samples to look for genetic changes that might be associated with positive responses, or resistance, to treatment. The hope is that such information can inform the development of new treatments for metastatic breast cancer.

So far, the project has signed up nearly 4,100 patients from across the U.S., and more than 2,400 of them have consented to share tumor samples and medical records. Last week’s data release will be the first of many over the coming months as more sequencing information becomes available, according to Project leaders. Making the data public was a top request made by the patients Wagle is working with.

Wagle is now launching similar projects for other cancers including angiosarcoma and prostate cancer. I spoke with Wagle before the Awards Gala in September about how best to partner with patients for research.

Xconomy: What advice would you give scientists and biotech companies that want to partner with patients for R&D?

Nikhil Wagle: The first thing is: really engaging patients throughout the process. One is to actually go to the patients, and tap into existing communities and that includes patient advocates and patient advocacy groups. Make sure to be inclusive and not ignore anyone and think actively about diversity. Working with patients includes before, during, and after [launching a research project].

What a lot of patients object to is not ever hearing about the progress and the results. And so every time something new happens or we discover something or we are sharing data, we tell all the people who are participating. So that they don’t feel like they were just involved in signing up, but they’re involved in what’s coming out of this.

Authenticity is a really important part of the engagement process. We’re not a nameless, faceless project. The MBC Project is not just a project with a website and a social media handle, where it’s not clear who the people are. The way we interact with patients is, myself, Corrie Painter our associate director, and the rest of the team, we’re on social media as ourselves. When we go to conferences, we sit with patients or they come and visit us and have lunch with us. And so it’s a very clear partnership where we’re all working together towards the same goal. It’s all of us in the trenches together. Part of that is interacting both on social media and in real life.

Also, we care about solving metastatic breast cancer. Our interactions with patients are not solely around our project, but around things that are important to people who care about advancing research on metastatic breast cancer: other research projects, or other community events that may have nothing to do with our project, but have to do with the community and the ultimate goal of solving metastatic breast cancer.

X: Has this project changed the way you think about research?

NW: It completely has. The idea from some years ago that this could enhance the ability to do research—I think that hypothesis has been proven true. But I don’t think I ever quite expected how profound an impact this would have on me. One, being able to work with patients on this common mission, not as subjects or donors, but as true partners. That has changed by approach to research in general. The value of information and the idea that patients can contribute to science, I probably underestimated, and the field in general underestimates. It really is incredibly powerful.

Also, the sense of urgency conveyed by the patients, the sense of gratitude that patients have that people are out there doing research, that has really spurred us on not just on this project but all of our research in the lab. Just being able to see a community of patients who are cheering on the research and willing to help accelerate the research has been incredibly motivating.

X: What’s the importance of engaging patients in research?

NW: I think engaging patients in research is incredibility important for a few reasons. Not only does it accelerate the research, but it also hones the mission, hones the research questions. And ultimately it makes sure that the research questions are directed in a way that’s going to maximally benefit the patients.

This is the fifth in a series of articles about the 2017 Xconomy Award Winners. You can read about the other winners, Armon Sharei (Young Innovator), the Bridge Project (Big Idea), Rob Perez (Community Contribution) and Lita Nelsen (Lifetime Achievement).

Author: Corie Lok

Corie Lok was formerly Xconomy's Special Projects Editor. Before joining Xconomy in 2017, she was at Nature for 12 years, first as an editor with the Careers section, then as a senior editor who launched Nature Network (a blogging and social networking website), and finally as an editor and features writer on Nature’s news team. She earned a master’s degree in science journalism from Boston University and was a producer on the science and health beat for two national radio shows at the Canadian Broadcasting Corporation (CBC) in Toronto. She then spent two years covering emerging technologies with MIT Technology Review before arriving at Nature. Corie is based in Boston and loves reading stories to her young son and playing the obscure but exciting winter sport of curling.