The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info
Patients connecting at a recent Patient Power event

Patients connecting at a recent Patient Power event

It was a Harvard Business School professor, in 1997, who coined the term “disruptive technology.” Thanks to Clayton M. Christensen. He understood that new things can shake up an industry or create a new one.  The PC, cell phones, cloud computing are great examples. But in pharmaceuticals, diagnostic testing and, more broadly, in healthcare in general, I would suggest that today’s best example is a human being, the patient. The patient is starting to shake up these industries, because they are getting smarter about their diagnoses, what tests are required and when, what the results mean, what clinical trials and medicines are available, and how side effects can be controlled. This is certainly true in cancer like the ones we cover in depth at Patient Power.

For a few years now, it has been in vogue in hospital marketing (at least in the U.S.) that care is portrayed as  “patient-centric.” But in many cases, that has been just marketing. The healthcare teams, comprised of mostly very well-meaning professionals, did their best on ever tighter schedules and with the knowledge they had. It has been variable how much respect has really been shown the patient as a consumer. Patients were forced to just accept what they got. But that’s changing fast. For years, the Internet has opened the “black box” of healthcare. We can learn about our diagnosis and meet others who have it, too. We can hear about all the latest treatments and find out who the experts are. We can discover what’s in research and how we can participate. We can become smart—often smarter than the first doctor we see—and we can quickly connect with others, so we are no longer alone. My passion has been to make this education and empowerment easier and more accessible to all.

What’s very cool now is that all this is coming to our mobile phone. So we can get the information and support we want in words, pictures and video—live or on-demand—in any language and where and when we need it. The “powerful patient” is poised to disrupt healthcare and be on top of the power pyramid instead of at the bottom.

I have an image of how a Swiss banker must treat wealthy clients who fly in to make deposits. I am not saying doctors and nurses should bow to us when we come in, but I do feel they should value us as increasingly well-informed consumers who are willing to partner with them for state-of-the-art care and strong efforts to preserve quality of life. We are people who will work hard on our own to discover all the options among healthcare providers, available tests and pharmaceuticals. If you truly partner with us to help us get the best option, whether it is yours or someone else’s, you will ultimately win. If you don’t, we’ll walk. And your slick marketing efforts, not backed by a 360-degree view of the facts, will be shown to be hollow and exposed.

Patients are now talking to one another today, and that will only increase. Our conversations will cross borders and hop over language and cultural barriers. It is happening now and will only grow. We are the disruptive technology. And while I respect so many in the traditional healthcare industry, I am really excited for us patients.

I welcome your comments!

Wishing you and your family the best of health!

Andrew

orgLogo_lungevity_180x39As a patient navigator, young adult cancer survivor and former caregiver, I know what the term “empowered patient” means.

It’s a concept where knowledge about your disease is powerful, and advocating for your own quality healthcare aids in your survivorship. There are a checklist of questions I can arm you with along with disease related information and education—all of the things that make you a more informed patient. And while all of those things are relevant and even critical, the fact of the matter is all the tools in the work shed won’t ensure that you can build a house or build it well. And there’s a big difference between a small building and a large five-room home. Let’s face it. Not all health conditions are complicated, and not all cancer diagnoses are the same.

I learned this firsthand recently with a new health condition I was diagnosed with that made my 1995 cancer diagnosis feel like a walk in the park. It took about 6 months to receive the final diagnosis. I “fired” two specialists, had 11 tests, four different scans and a biopsy. My health status for those 6 months was uncertain. I felt overwhelmed with the healthcare process and with medical professionals who didn’t focus on patient-centered care or practice even basic communication skills. This patient navigator needed a patient navigator! Looking back now, I can laugh at the irony, but at the time I really wanted to scream. THIS is what a few of the patients who came to me at LUNGevity had experienced. I finally understood.

Did that experience mean that I hadn’t been a capable patient navigator? I really don’t believe so. But now I’m better informed. If anything, it’s made me more compassionate to the frustrations and difficulties that patients face, and now I know how to navigate around those frustrating roadblocks.

My best advice to new patients is to get informed about your disease and treatment options, connect with other patients who have been through what you have been through, and never stop fighting for yourself until you are heard and receive quality care.

While my personal experience made me aware that not all doctors focused on patient-centered healthcare and not all medical professionals and staff cared about their jobs or the patients they serve, it also made me aware that there are really great specialists and medical professionals out there and that as patients we can never have enough tools or instructions on how to navigate this complicated process of medical treatment and survivorship.

That understanding is one reason why I believe in the importance of collaboration and partnerships that focus on educating and supporting patients and their families. I’m happy to announce a new partnership between LUNGevity and Patient Power. Patient Power is dedicated to providing patients with the resources and information they need to have the confidence, knowledge and hope to help the patient—or their loved one—live well with cancer.

At LUNGevity, we know that when someone is diagnosed with lung cancer, there are often more questions than answers. How do you get information you need to make the best decisions about your care? When exactly does survivorship begin? LUNGevity Foundation and Patient Power are joining forces to help patients engage in active communities with medical experts and patient advocates and to get educated about their disease by providing news that brings a meaningful impact to survival rates while diminishing stigmas that are too often associated with having lung cancer. Learn how to live well, so you can survive well. Stay tuned for exciting collaborations that will give you access to more tools to keep you strong on your journey.

Connect with us on Facebook, at in-person events across the country, or help others breathe easier by sharing your story that could be featured in an upcoming program.

Katie Brown

Patients at the Patient Power Myeloma Forum in Barcelona

Caregiver and Patient at the Patient Power Myeloma Forum in Barcelona

When I was first diagnosed with chronic lymphocytic leukemia (CLL) in 1996, I just wanted the doctor to heal me. I dreamed of a magic wand that a healthcare provider could wave that would take the disease away as suddenly as it had appeared for me (even though it had probably been developing for years, I just didn’t know it!). No such luck, of course.

So what followed was a total disruption to my life. Fear, sleeplessness, psychological counseling, and a long procession of diagnostic tests and years of blood tests, IVs, and generally being a pin-cushion. Many people in white lab coats and uniforms have done many things to me, as they have to so many others.

One might wonder whether our role as patients today is simply to submit—that a passive role is good enough. After all, it requires so much strength to march from appointment to appointment, exam to exam. Go here, go there.

I would argue that today the passive patient, or at least the passive patient and his/her care support team, is likely to get the short end of the stick. Fear will be greater because you will be less knowledgeable about what’s going on and what is possible; you’ll have no chance to ask important questions, no chance to bring up something a provider has overlooked, no chance to sound an alert about a mistake (and there can be many), no chance to get a second opinion, no chance to participate in a clinical trial at another center, no chance to get support from others.

So whose responsibility is it to make you active rather than passive to be sort of an “impatient” rather than a “patient?” Yours! You have that choice. You can say “heal me” and roll over and pretend it’s all a bad dream. Or you can pick yourself up off the floor, put one foot in front of the other, and grab back some level of control. Believe me, it is all to the good, and I have seen that not just in my life but in most of the thousands of patients I have interviewed. The Andrew Schorr unscientific poll results are clear. If you accept responsibility to be an engaged. questioning, information-seeking patient; you have the best chance of doing better and feeling better along the way.

Cancer is not a bad dream. It is real life. Just as you take responsibility for other aspects of what you face, you gotta take responsibility for this journey, too.

Agree or not? Tell me what you think, and we always welcome the publishing of other points of view.

Wishing you and your family the best of health,

Andrew

bio_margo-sorgman_180x243_aMy name is Margo, and I was diagnosed with PV in late spring of 2014.   Probably like many of you with an MPN diagnosis, it was incidental.  I was attending a special event and did not feel well.  This led to a series of steps, which brought me to Dr. Brady Stein, a wonderful doctor.  I came to our first appointment with a single-spaced narrative and set of questions about red blood cell production.  He leaned forward and told me the study of MPNs was his life’s work and that he would take good care of me.  And as I walked home, I knew I was going to live a full life.

I keep up to date, like many of you.  I am learning how to navigate those “firsts” after diagnosis.  When I went for my flu shot, I updated the form to include PV. It felt strange at first.  But the more I explained PV, the more of an authority I became.  I know I will approach my diagnosis with energy and a determination to take charge.

Of course, there are some changes.  But many of the changes are improvements.  I pay more attention to my body.  When I get tired, I can decide whether to rest or keep going.  When I am feeling fatigued after standing in one place for a bit of time, I now shuffle my feet to alleviate that fatigue.  Another positive outcome from my PV diagnosis is to think about how I spend my time.  I am getting better at selecting activities that come my way.  When I go for my blood tests and periodic phlebotomies as a result of my HCT level, I am surrounded by others with cancers so much more serious than mine.  And I leave feeling a bit guilty about my good fortune to have a superb doctor, a robust field of MPN research, and a great family and friends network.

PV has not robbed me of the joy of loving others, watching a beautiful sunset, and being mesmerized by our Maestro Muti as he conducts the Chicago Symphony Orchestra.  I take classes, volunteer actively and love to write.  There is much insight when I see my hopes and tensions on the page.  Soren Kierkegaard reminds me that “life can only be understood backwards: but it must be lived forwards.”  I agree.

After diagnosis, what changes have you found to actually be improvements? Tell me in the comments section.

Margo

Social media that connects me with other people with cancer—especially the specific cancers I have dealt with—has been a godsend to me. In 1996, when I was diagnosed with chronic lymphocytic leukemia (CLL)—a disease I had never heard of—it was other patients on the original ACOR.org listserv that connected me with an expert in my […]

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In short, YES. It’s the only way treatment is advanced in diseases like multiple myeloma and has resulted in FDA approval of six drugs for myeloma treatment in the last 11 years…with more coming.  We don’t have a cure yet, but I’ve seen survival averages double, even triple since I was diagnosed 20 years ago.  […]

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I had recently retired and started to get busy with my projects when I paused briefly for a routine physical—no worries, just a quick in-and-out and back to the fun stuff. But wait. There’s more—like the doctor bringing me back in to his office, and closing the door. “We have confirmed that you have cancer. […]

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As I listened to Esther tell her story, my own came flooding back to me. My husband was always the “tough guy”—nothing was too heavy for him…literally. He was very “old school”—wanted to be the “man” of the family—and I should be the “weaker woman.” Well, that never really existed—maybe only in his head. I’m […]

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Dr. Leonard Salz, a renowned GI cancer specialist at Memorial Sloan Kettering Cancer Center in New York, said on the U.S. news program “60 Minutes” the other night that we must—in the U.S.—discuss the high cost of cancer drugs. Dr. Hagop Kantarjian, head of the leukemia department at MD Anderson, whom I know well, agrees as […]

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When I was first diagnosed with Multiple Myeloma in 1995, I was assigned an oncologist. Since I didn’t know anything about myeloma, I asked him about his experience and, in particular, how many myeloma patients was he seeing.  When he said “two,” that didn’t give me much confidence and I looked for another oncologist/hematologist, whom […]

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