Wednesday, May 17, 2017

Communication Between Cancer Patients and Researchers: Challenges and Opportunities

Taking The Mystery Out Of Cancer Research

When I started working at the National Foundation for Cancer Research, I was charged with educating our donors about the cancer research we were funding. To do that, I felt it would be helpful to meet the actual researchers personally, get to know them and their work, so that I could articulate this to our donors. What better way to take the mystery out of research by sharing their stories? I became known as the Cancer Research Evangelist because after getting to know many cancer researchers personally, and visiting their laboratories, I became an advocate for the need for funding to support their work.
In my experience, many of the researchers I met were passionate and approachable. They had offices with pictures of their families, they loved their work, and they just came across as real people. However, not a lot of people I know have ever met a cancer researcher.
I think it’s important that researchers and patients get to know each other because researchers can help give patients hope that someone is working on figuring out what is causing their cancer, and working on how to treat it. And I think it’s important for researchers to engage with patients because it puts a face on the disease their laboratory is trying to solve. This gives the researchers motivation and greater purpose to their work. I think there are a few important reasons for this, as well as challenges and opportunities to improve the communication between researchers and patients.
The Challenge For Researchers
In my experience, there are two primary reasons that researchers do not engage with patients, and the challenges for them are very understandable.
First, the system: researchers are so burdened with getting funding grants, and with making sure that they produce published papers so they get tenure, they simply do not have the time to engage with patients. Indeed, I was astonished to learn that the institutions where researchers worked did not financially support their labs. For example, if you’re a cancer researcher at Dana Farber, you get lab space but you are responsible for raising money to support your staff and some of the equipment and supplies. Almost every single researcher I’ve met has told me that they spend about 75% of their time fundraising. That’s how much time it takes to write grants to the NIH and nonprofits like the American Cancer Society and other foundations, do all the paperwork, and meet with foundations to help with fundraising. This all takes valuable time away from time spent in the laboratory. Given that, it’s hard to imagine researchers doing outreach to patients.
Unfortunately, this is the nature of the system, and I think that sometimes the humanity gets lost in the sense that hospitals or major medical research institutions may not appreciate the value of researchers spending time with patients and educating the public. From the researchers’ perspective, educating the public can help spread the word about their work and help in raising money for their work. Patients can become advocates for the research lab.
In a perfect world, research labs would operate on a fixed supported budget where they know they have money to do their work. And the time they may have wasted not getting a grant – which in oncology, only 12% of grants get funded – would be spent on community outreach and education.
In my opinion, the second reason many researchers don’t connect with patients may just be because of personality. The average researcher may not be very comfortable meeting with laypeople to talk about their work, or see the value in connecting with patients. While I’ve met some that are at ease in social settings, for some this is just not their gift.
The Challenge For Patients
How many cancer patients have ever met a cancer researcher? Or visited an actual research laboratory? Probably not very many. But I think patients would benefit by connecting with cancer researchers to understand what they do and see how committed they are to the cause. And they would have the ability to share their real patient experience.
In my experience, the primary reason patients don’t connect with researchers is they just don’t know how to find or approach a researcher. Before I started meeting researchers and visiting labs, I thought of cancer research as this vague, mysterious and institutional concept. I just thought of it as the institution — such as Dana Farber or Mayo Clinic — that was doing the research. I never even considered the actual people who were doing the work! Most patients probably are like I was, and didn’t even think about contacting real researchers. Other patients may just have a personality that makes them uncomfortable reaching out to strangers, or they might be intimidated by talking to someone with high level standing in the cancer community. In particular, many may not think they could be comfortable contacting someone at what they might consider prestigious institutions.
But patients could benefit from meeting researchers and advancing their understanding of their disease. What better source of information about a patient’s actual cancer diagnosis than a person doing research on the specific problem? Looking back at my own case, when I was diagnosed with a neuroendocrine tumor in my lung, it would have been amazing to meet a scientist who studies my disease.
The Opportunities
I believe there are many opportunities to improve the communication between researchers and patients, starting with these two:
First, cancer nonprofits and related organizations need to play a role in connecting patients to researchers. A good example is the American Association for Cancer Research Scientist-Survivor Program (AACR SSP). The goal of the program is to encourage survivor and patient advocates to develop stronger backgrounds in cancer research and related issues, keep abreast of recent advances, and be exposed to the knowledge and dedication of cancer scientists. It also allows for scientists to gain a more personal understanding of cancer’s impact on patients and their loved ones. Several of my Precision Medicine Advocates Program colleagues attended the 2017 AACR SSP and wrote about it here, here, and here.
Many cancer nonprofits such as the American Lung Association, and the Multiple Myeloma Research Foundation also have access to and have relationships with researchers. They may know which ones are open to and have the personality to want to meet patients. These nonprofits should proactively educate their communities and encourage them to ask to meet researchers. And they can invite researchers to their events. For example, last year at a Making Strides event, the American Cancer Society invited researcher Johnathan Whetstine from Massachusetts General Hospital to come meet participants in the walk. He volunteered his time to come out meet people. Hospitals and medical research organizations can also have “meet the researcher” events and encourage patients to come.
Second, social media is a great opportunity for patients to find researchers interested and willing to meet and engage with patients. For example, anyone can post asking if there is a scientist out there who is studying the particular area of interest who is willing to connect.  Researchers on social media are likely the ones already engaging with patients.

The bottom line is that some of the challenges such as researchers’ time cannot be solved. But with willingness from all stakeholders, and with the help of nonprofits and social media, the communication between researchers and patients can improve.