Twitter Bio: Breast Cancer and Global Oncology Specialist, University of Washington and Seattle Cancer Care Alliance (SCCA)
From the WE CAN (an organization she co-founded) Facebook page: WE CAN is an advocate organization for breast and other women's cancers around the world. We connect medical professionals, patients, advocates, and policy makers to change the face of women's cancers in the developing world.
From the Team Survivor Northwest (another organization she co-founded) Facebook page: Team Survivor Northwest provides free fitness and health education programs to women at any stage of cancer diagnosis and at any fitness level.
Which social media platforms do you find the most useful?
"I got involved with Twitter first when I was asked to do some Twitter chats. Then I became involved with the #BCSM-Breast Cancer Social Media-group early on. That group, which is led by a surgeon and two patient advocates (@DrAttai, @jodyms, and @stales), have a tweetchat every Monday night (OT 12/25/13 issue). They have asked me to be on it several times. Sometimes I just lurk in the background and comment a little, and sometimes I'm one of the lead speakers, if you will.
"Then I started seeing the value of Twitter at medical meetings as well as in connecting to the advocacy community.
"Seattle Cancer Care Alliance has a Facebook page (http://Facebook.com/SeattleCancerCareAlliance), and so does the Women's Empowerment Cancer Advocacy Network (WE CAN-http://Facebook.com/womenscanceradvocacynetwork), an organization I help lead. Another group that I co-founded back in 1995-Team Survivor Northwest, which gets women cancer patients exercising-also has a Facebook page (http://Facebook.com/TSNWSeattle). I don't administer those Facebook pages, but I contribute blogs and information."
How do you interact with social media?
"Every morning, I get up early and I probably spend about 45 minutes scanning Twitter and reading to see what I might want to re-tweet. If I see something on pages that I've 'liked' on Facebook, I might retweet those as well. At the end of the day, I do another quick sweep of Twitter, the blogs, and Facebook.
"When I'm at an ASCO meeting or the San Antonio Breast Cancer Symposium or a SWOG meeting, I am sometimes part of the group that does real-time tweeting of presentations. I know there are a lot of clinicians and patient advocates who can't be at the meeting but are anxious to learn the results of various studies.
It's fun because you can have some dialogue in real time-for example, 'Does that one-month prolongation of survival really mean anything? What's the toxicity?'-going back and forth.
"And people bring up points that I might not have thought of in the short term, so I like to get other people's opinions about the data.
"My primary goal for social media is to help educate and get information out to my followers, which are a lot of patient advocates and some clinicians. I view my role as being a promoter of patient advocates and an educator of the public and patients.
"I am also scanning to learn things that are new. I probably would have heard about them in a day or two if I weren't scanning, but social media is always where I first see a new drug approval or a press release about a study that I'm interested in.
"Networking is another area in which I see the value. Within SWOG, we have a social media working group but it's only a minority of the researchers in SWOG who are really active in it (OT 1/25/14 issue). We're trying to build that because we think this could be a good way to get information out about clinical trials, eligibility changes, and things like that. But that is still in its infancy."
How do you see social media supporting cancer research?
"One example is using Twitter to actually plan a clinical trial. SWOG was proposing a trial within the National Cancer Institute's National Clinical Trials Network related to long-term breast cancer survivorship. We were preparing for a meeting in Bethesda with the NCI, and we knew what some of the questions would be 'What do patients think? Will they agree to enroll and be randomized?'
"So I partnered with the #BCSM group to do a really quick survey of the breast cancer community. We sent out a link to a survey that asked five questions. We had about 100 respondents within a 48-hour timeframe. We closed the survey and did the analysis, and I was able to use that to show that, yes, patients would agree to this randomization.
"We also asked an open-ended question: What do you think are the top three issues in long-term breast cancer survivorship that you would like to see studied?-and we were able to show a summary of that. That was a very cool example of being able to get some information very quickly that addressed what patients thought about a trial."
Do you encourage your patients or patient advocates to use social media as a resource?
"The Seattle Cancer Care Alliance publishes some nice pieces in a blog that is linked to Facebook, and, for a subset of the population, this is a good form of communication. If I see a patient in clinic and we are talking about, for example, healthy lifestyles, I'll say 'There was a good article by one of our nutritionists on the Facebook page. Go look it up.'
"We use the WE CAN Facebook page to communicate when we have an upcoming conference. For example, we will have a conference in Romania this fall and one in Kenya next spring, so we use the Facebook page as a way for the patient advocacy groups to see the dates and the logistics, post photos and comments, and try to stay connected."
Continuing Series
The full archive of Oncology Social Media Profiles can be found in this Collection on the OT website: bit.ly/OT-OncologySocialMediaProfiles