Patient Support Not Just a Buzzword for New England Doc

Matthew Katz, MD

As medical director of radiation oncology at Lowell General Hospital in Massachusetts, Matthew Katz, MD, is well attuned to trends in breast cancer treatment.

He and his colleagues have adopted the practice of using shorter radiation courses—for example, treating lumpectomy patients when appropriate with a slightly higher dose for 3 to 4 weeks rather than a standard dose for 5 to 6 weeks. They have patients with left-sided breast cancers use deep inspiration breath hold to inflate the lungs, moving the heart momentarily to reduce its radiation exposure. And they’re interested in identifying older women who can avoid post surgical radiation that is unlikely to lengthen their lives.

But the area that most distinguishes Katz may be his interest in understanding the subtle nuances of doctor-patient communication that contribute to patients’ decision making and their experiences of treatment. That has led him to focus on supportive conversations in his practice and to venture into the wilderness of online social media to learn more about how patients view their treatment.

Katz said he’s tried to apply what he has learned to moments that are particularly stressful, such as routine scans after treatment has ended that can produce “scanxiety” about recurrence.

“It's just trying to be better at listening and reinforcing women's feelings, and trying to elicit them when they're discussing some of the stresses,” he said. “People need us to be there not just to fix things, but to be there for support. ‘Doctor' means teacher in Latin. So if we're not able to listen and interact well and educate our patients, I don't think we're doing our job.”

Katz said the opportunity to have more direct patient contact contributed to his decision to go into community practice in 2004. After his training he worked at Massachusetts General Hospital in Boston for a year and then joined Radiation Oncology Associates, a 17-doctor practice that provides services at Lowell General and other hospitals in New Hampshire and Massachusetts. He has also taught at Harvard and University of Massachusetts medical schools.

At Lowell General, Katz treats the gamut of cancers and works with multidisciplinary teams focusing on breast, genitourinary, and head and neck cancers. Massachusetts has a relatively large elderly population and its cancer rates are significantly higher than the national figures, though overall mortality is lower.

Breast cancer rates are particularly high in New England. Connecticut has 137 cases a year per 100,000 women, with Massachusetts at 136, New Hampshire 134, Rhode Island 130, and Vermont 129.¹ The national rate is 123.

Considering the range of treatment options available to cancer patients and the crucial role they themselves play in deciding which course to follow, Katz has long been interested in understanding how patients understand their disease and treatment, and in helping educate them so they can make informed choices. As part of that effort he created and posted online a detailed 83-slide guide to breast cancer and radiation therapy to help patients make decisions.²

At the same time, he noted that providing clear information does not always result in a patient going with what a doctor considers the medically advisable choice. For example, many older women choose to undergo radiation after a lumpectomy in order to prevent recurrence of their cancer, even though studies show it will provide little survival benefit. Katz compared that choice with the decision to have a prophylactic mastectomy.

“It may not improve their physical health, but their mental health may improve,” he said. “It's a controversial area, but you always have to look at whether patients are making health decisions with the necessary evidence in front of them to make that choice.”

To get a better sense of how non-experts talk about cancer, Katz started communicating with the general public about the disease. In 2006 he began answering questions about oncology on Yahoo! Answers, a site that allows anyone to ask about anything, and anyone to answer.

“I was able to get a better idea of how people speak in plain language, and get a sense for the way I would say things that are medically important without it going over people's heads,” Katz said.

He moved for a time to Digg, a news-sharing site, but since 2010 has been active on Twitter, where he uses the nickname @subatomicdoc and posts a steady stream of article links and comments related to oncology, medicine in general, and other topics that pique his interest.

Twitter is a largely unstructured site where useful information can be difficult to find, especially for new users. About 3 years ago cancer survivors and advocates began organizing their discussions using hashtags like #BCSM, for breast cancer social media, and Katz joined in, providing information and answering questions.

“I found it extremely valuable to me because I could learn from other people something that I could expect my patients were also feeling, but might not share with me,” Katz said. “Because of some of the limitations of time that I have with each patient as I see them, I felt I could learn how to be better at asking certain questions at the right time.”

Katz is careful to note that doctors may not discuss patients’ confidential health information in open online chats. But from the various Twitter users who participated, he got pointers about what to ask and what to listen for, showing that “If I picked up on it and listened well enough in the exam room, I might be able to ask the right question to help one of my patients, having learned from someone else who was willing to share his or her experience,” he said.

BCSM soon swelled into something like a social movement, with weekly chats, national press coverage, and a nonprofit that provides evidence-based information to people affected by breast cancer. ³

Katz said he has participated in similar discussions using hashtags such as LCSM, for lung cancer, and GYNCSM, for gynecological cancers, and he has proposed what he calls a “folksonomy” of more than 60 hashtags for different cancer sites. He is the lead author of a paper on disease-specific hashtags, and created a poster on the topic that he put online and displayed at this year’s ASCO annual meeting.

To encourage other radiation oncologists to connect with one another and discuss ways to improve cancer care, he also started a website called Radiation Nation that features short articles on anti-cancer therapies, patient education, survivorship, physician collaboration, and other topics. A recent piece he wrote asks, “Is there life after cancer?” and discusses the evolving definition of being a survivor.

Katz said he would like to see more doctors engaging in social media.

“It's a communication and education tool, and it's a powerful one, so we need to learn how to use it well,” he said. “There's what we can do in clinic, that is a private matter that we're used to dealing with, but then there's also public conversation. If doctors are not involved in public conversations about health, where patients are learning about it, then that may be something that we need to be doing more of in the future.”

Katz’s educational and outreach work extends beyond Twitter and Radiation Nation. He previously served as chair of communications for the American Society for Radiation Oncology and as an external advisor for the Mayo Clinic Center for Social Media.

He’s also contributed to published studies; created a personal website, Subatomicdoc.com, that explains his personal philosophy and offers manifestos on digital rights and citizenship; and written dozens of online articles for various sites about social media, the experience of practicing medicine, and related topics. In a 2012 piece he pushed back against the popular metaphor of cancer as the body being at war with itself.

“The war metaphor is a bad one,” Katz said. “In the setting of cancer, people usually use the war metaphor when in fact it's still part of our body.”

To show a different way of thinking about cancer, he inserted medical terminology into a meditation by 17th-century metaphysical poet John Donne about death and the church.⁵

“There are a lot of very powerful kinds of writings people really respond well to. [The Donne piece] was trying to find a way to tinker with something and tap into it, in essence by doing what you would call a mashup,” he said.

“You don't need to completely reinvent the wheel. You can use something that's been very successful at getting through to people, and make it accessible in a way that could be useful,” he said. “It's just experimenting and tinkering around.”

References

1. American Cancer Society. Cancer facts and figures 2015. http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf. Accessed July 13, 2015.
2. Katz M. Early stage breast cancer. http://www.slideshare.net/subatomicdoc/early-stage-breast-cancer. Published October 2011. Accessed July 13, 2015.
3. Szabo L. Breast cancer survivor group is a social movement. USA Today. http://www.usatoday.com/story/news/nation/2012/10/23/breast-cancer-group-support/1637633/. Published October 23, 2012. Accessed July 13, 2015.
4. Katz M, Utengen A, Anderson PF, et al. Disease-specific hashtags for online communication about cancer care.. J Clin Oncol. 2015;33(suppl; abstr 6520).
5. Katz M. Through the lens of molecular medicine: John Donne, illness, and cancer. Oncology Times. http://journals.lww.com/oncology-times/blog/voices/pages/post.aspx?PostID=37. Published January 24, 2012. Accessed July 13, 2015.