thrivingwithlungcancer

“Patient engagement” is a relatively recent term for patients becoming actively involved in their health care experience by educating themselves and working together with their doctors to make health care decisions. Sometimes it’s used as a buzzword to simply mean patients complying with what their doctors tell them to do. Among health care activists and advocates, though, it means patients actually working as partners with health care professionals. If you’re asking your doctor about genetic testing, if you’re reading blogs and visiting websites to figure out what you should know about lung cancer besides what your doctor has told you, or if you’re looking into clinical trials and making choices about them, you are an engaged patient.

You might hear the term “participatory medicine,” coined by Gilles Frydman (see http://participatorymedicine.org/). You might also hear the term “e-patient”: Tom Ferguson, MD, coined this term to describe patients who are “equipped, enabled, empowered, and engaged” in their own health and health care. (Also, the “e-” prefix, reminiscent of “e-mail,” intentionally connotes engaged patients’ use of the Internet to learn as much as they can and connect with one another).

Dave deBronkart, who calls himself “e-patient Dave,” has given a very moving and popular TEDx talk on patient engagement, “Let Patients Help” (see below) and has written a useful handbook by the same title (http://www.epatientdave.com/books/).

Patient engagement and participatory medicine are, of course, not really new at all. DeBronkart gives credit to “hippies” (he was one himself, and Tom Ferguson was the medical editor of the best-selling Whole Earth Catalog in the 1960s and 1970s). Patient engagement also owes a tremendous debt to the women’s health movement of the 1970s and 1980s, and the AIDS movement of the 1980s and 1990s. It was women’s health activists who first disseminated information about gynecological health for a lay audience, insisting that women had a right to be full partners with their doctors in making decisions about their bodies. It was AIDS activists who campaigned for, and won (among many other victories) the public database of clinical trials that has evolved into http://www.clinicaltrials.gov.

Conversations about lung cancer on patient engagement websites and in the #lcsm (Lung Cancer Social Media) tweetchats actually remind me a great deal of conversations about AIDS with ACT UP New York’s Treatment and Data Committee and its spinoff group Treatment Action Group in the 1990s. I used to be stunned, on an almost daily basis, at the scientific information non-scientists could understand and explain when their lives depended upon it.

Today, these conversations are happening online, using technology that barely existed 20 years ago, instead of face-to-face. This is a huge difference: it means that patients with rare diseases (or, say, common diseases with rare genetic mutations, like my own ROS1) can find one another and share resources, even if they don’t live anywhere near each other. When ACT UP people get together these days, we often say, “Imagine what we could have done if we’d had the Internet!” We usually mean we could have planned demonstrations to turn on a dime – but we could have helped a lot more people understand the newest AIDS research as well.

(There are other major differences, too, of course. ACT UP was rooted in vibrant queer urban subcultures, and joyously celebrated queer lives in a time when much of the country didn’t care if gay people died. ACT UP also had a strong social critique of the racial, economic, and gender inequities of the health care system, which so far I don’t really see among “e-patients”; some of us can be a little ignorant of how difficult it might be for a poor single mother with lung cancer to find the leisure time to explore clinical trials online.)

Here are some online history resources would-be “e-patients” may find inspiring:

• The history of the Boston Women’s Health Book Collective and their landmark 1971 book, Our Bodies, Ourselves http://www.ourbodiesourselves.org/about/history.asp
• The stories of surviving AIDS activists of ACT UP New York, in their own words http://www.actuporalhistory.org/

I also highly recommend the following films: Jim Hubbard and Sarah Schulman’s United In Anger: A History of ACT UP (Los Angeles: The Film Collaborative, 2012), http://www.unitedinanger.com/ and David France’s How To Survive A Plague (New York: Sundance Selects: MPI Media Group, 2013), http://surviveaplague.com/. It’s a little easier to get your hands on How To Survive A Plague, but check academic libraries for United In Anger.

When I was discharged from the hospital in December 2012, my oxygen levels were still kind of low. They were high enough for me to go home without oxygen, but definitely still below normal. I was worried about that. Some friends bought me this pocket pulse oximeter:

I clip it on my finger, press the white button, wait a few minutes, and presto! It shows my oxygen saturation and my heart rate.

(99 percent is normal. I’m proud of that heart rate, too. For an overweight middle-aged lady with lung cancer, I have a great heart rate and very good blood pressure.)

The pulmonologists at the hospital weren’t nuts about the idea. They said they got a lot of phone calls in the middle of the night from patients who were fine, but were getting worrisome readings on cheap, inaccurate pulse oximeters. Well, it’s certainly true that you can accidentally look at it upside down and get very worried.

I find it very reassuring, though. As I got my strength back after the hospital, I could see how my body was tolerating exercise. I liked seeing the numbers gradually improve. The pulmonologist I see as an outpatient checked my little pocket meter against the expensive equipment in her office, and said it was actually pretty accurate.