Excerpt from his bio at #LCSM, the Official Blog of Lung Cancer Social Media (lcsmchat.wordpress.com): “Dr. West currently cares for cancer patients directly at Swedish Cancer Institute in Seattle and also heads multiple national and regional cancer trials. He founded the nonprofit Global Resource for Advancing Cancer Education (GRACE) (cancergrace.org) to provide timely information directly to patients and caregivers. He also moderates #LCSM chat.”
When Jack West, MD, Medical Director of the Thoracic Oncology Program at Swedish Cancer Institute, presented at a TEDx conference in 2011, he said something that would make some physicians squirm: “New medical information is being disseminated at such a rapid rate that overwhelmed doctors can't feasibly keep up with all of the progress being made for the range of diseases they are called upon to treat. We are increasingly seeing an individual physician becoming a limiting factor on our ability to capitalize on this new knowledge.”
Fortunately, he said, patients can—and will—help overcome this limitation by seeking out new knowledge specific to their medical situation and working with their medical team to make treatment decisions.
“As we evolve to a new era of personalized medicine, patients will need to take a more active role in their own care,” he said in that talk. “They will need the right tools, and the medical community has an opportunity—and arguably the responsibility—to provide them so that everyone can benefit from all of the knowledge available, rather than be limited by what any one individual happens to know.”
That is why, he says, he founded GRACE, the Global Resource for Advancing Cancer Education, (cancergrace.org) in 2007. Started as his own personal effort to provide blog posts, podcasts, and forums focused primarily on lung cancer, GRACE has since fulfilled his vision by growing to include many contributors covering a wide range of cancer subtypes.
The effort currently serves more than 10,000 cancer patients and their loved ones from more than 120 countries each month.
How did you come to create an online resource for patients who need education about their specific cancer situation?
“I read The Long Tail by Chris Anderson, the editor of WIRED magazine, in which he describes how much incredibly valuable content there is in the ‘asymptotic’ tail of the curve—whether that is music that is downloaded from online sources that is not popular enough to ever be in a music store, or Amazon titles that would never be in a book store because too few people in any one geographical area are interested. He makes the point that the Internet makes it remarkably more feasible to deliver digital content that is needed by relatively few individuals over a broad geography.
“I have a significant clinical focus in lung cancer—and within that, I have a long-time interest in never-smokers with lung cancer and a rare type of lung cancer that has historically been called bronchioloalveolar carcinoma. As the management of lung cancer was becoming increasingly complex several years ago, I had noticed that a lot of these patients were being managed in a way that was less than might have been optimal. This was understandable, because most clinicians had nothing close to a critical mass of experience to guide them.
“The field of lung cancer—and by extension, those of many other cancers—had become so complex that no general oncologist could feasibly keep up with all of the new developments in so many fields.
“So I wanted to upload a distillation of my particular expertise in a condition that I specialize in. If I do a one-time consultation with a patient who comes to me for a second opinion, it can be a very helpful experience for that single person, but the discussion evaporates after that individual consultation. On the other hand, if I spend a comparable amount of time making digital content freely available on demand, it can help a population of people far more efficiently.
“As I started looking for a place to put out this information, I participated in some of the discussion groups that are patient- and caregiver-oriented, and they varied in quality. There really wasn't at that time an online setting where patients and doctors communicated readily together. So, I started OncTalk to be that kind of place in 2006, and that later evolved into GRACE.
“The Internet and social media make it very easy to perpetuate ideas. If we provide high-quality information, oncologists and other professional cancer care providers can leverage the opportunities to distribute information easily. If we stand on the sidelines, people will still seek information about cancer, but the void will be filled by other sources that are far less constructive.”
GRACE uses YouTube videos, blog posts, Twitter, Facebook, podcasts, and a very active online forum to share information about a range of cancer situations. What platform do you like best?
“All of these Internet-based efforts are remarkably efficient ways to convey good information to a wide range of people. I don't really think of myself as a guy who's focusing on Twitter or has a Facebook community; I just want to avail myself of the best technology to do the basic task at hand. I expect that the platforms we use may well change over time, and we should just follow the principle of delivering easily accessible, timely content in the best ways available to reach a broad population.
“An advantage of providing information in longer forms such as blog posts or some videos is that they can provide enough information to offer some nuances of a complex situation and not just a simple, one-sided view. I also emphasize that we can provide information about the qualifications of the person conveying the information— it's not just a faceless entity of someone on the Internet with questionable credibility—and the evidence that informs the perspective offered.”
Why did you help start the #LCSM Twitter chat?
“The goal is to generate a lung cancer community online. We hope to create an organization or movement that is not affiliated with any single nonprofit, but is a place that works across several platforms—Twitter, Facebook, its own website, blog, etc.—where people can share information about lung cancer that ranges from patient experiences to news about clinical research to controversial questions and so forth. We want to share information more than to have any specific agenda about one issue such as screening or funding.
“The #LCSM hashtag was originally used by Deana Hendrickson (@LungCancerFaces) and a few others. The impressive success of the breast cancer community under the #BCSM hashtag and tweet chats is something that anybody would hope to replicate for their own cancer community. So I sent a Twitter direct message to Deana suggesting that we start our own Tweet chat and saying I would be happy to moderate it.
“We did our first one in late July: our numbers have been great for a starting effort, and these are very vibrant discussions. And it was remarkable at the first one to see so much enthusiasm and an actual community of people who have a real interest in discussing lung cancer.
“Historically, this has been a very challenging cancer, partly because of the grim statistics and the biology of it, but also because of social issues, the stigma, and the poor funding. So I hope that we can be a big part of gradually turning that ship around and making it so that it isn't a source of shame, but rather, a rallying point for the lung cancer community.”
Is the oncology community ready to embrace the idea of educating strangers about cancer online in addition to treating their own patients?
“There's definitely more of an interest in the potential utility of and benefit from the Internet and social media among younger colleagues, but even among the relatively younger oncologists, engaging patients in educational efforts in this way is not something that is taught in our training.”
How do you see social media changing the way oncologists practice?
“What I think is inevitable, or at least highly desirable, is that doctors will come to accept, and perhaps embrace, a role as a focal point in interpreting information. Ideally doctors will be doing more information prescriptions, providing recommended websites or some education about how to interpret information, such as identifying the source and recognizing that larger clinical trials are of much greater value than some report about an in vitro study.
“The idea is to have the patient come back like a honeybee and say, ‘Hey, here's something I found—what do you think of it?’ Then the patient and physician work together to develop a plan with a mutual consensus rather the doc saying, ‘Here's what you should do,’ and the patient nodding and saying, ‘Sure, whatever you say, doc.’”
In your TEDx talk, you tell the story of a man who appeared to be dying of lung cancer until his online search helped pinpoint his diagnosis and identify an emerging therapy that has helped him so much that he is now serving as a state senator. Do you worry about the Internet giving false hope to patients or undermining patients' confidence in their physicians?
“The physicians I really respect do not feel threatened at all by GRACE. Information on GRACE often either corroborates what patients are already hearing from their physicians or reshapes it in a way so that patients can accept it better.
“For example, if a doctor in Montana tells a patient with metastatic lung cancer that he has an incurable disease, that patient may think, ‘Well, that may be the case in Montana, but I'm sure Memorial Sloan-Kettering or someone in Seattle can cure it.’ When they look online and see the exact same kind of recommendations and prognosis information that they are hearing from Dr. Smith in Montana, it is at least settling to the patient to hear the same thing from multiple sources, including people who are not directly involved with their care. That can provide a very comforting virtual second opinion.”
The full archive of Oncology Social Media Profiles can be found in this Collection on the OT website: http://bit.ly/OT-OncologySocialMediaProfiles