The Benefit of Being a Vocal Cancer Patient

September 8, 2014
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cancer patient speak outAll of us want to be in control of our lives. We decide when we eat, when we sleep, and we pick our friends. When we get sick, why should we give up control? Is it because the doctor knows best? What if he or she is wrong or just behind the times?

cancer patient speak outAll of us want to be in control of our lives. We decide when we eat, when we sleep, and we pick our friends. When we get sick, why should we give up control? Is it because the doctor knows best? What if he or she is wrong or just behind the times? My view, for cancer patients for sure, is that we can’t afford for our doctor to be “wrong.” And apparently an increasing number of other patients agree with me, as born out by the results of our Patient Power Summer Survey.

I am delighted to tell you that 850 people affected by cancer today, the vast majority of them patients themselves, recently took the time to answer our 33-question survey. No one was paid, and there was no outside sponsor. The survey was an effort of Patient Power and our research partner, Aptel Research. Patients answered to help us help them with our plans for more precise education and empowerment.

We’ve sorted the data to zero-in first on 700 people who are in the U.S. And the results show how the Internet, and specifically PatientPower.info and other credible social media sites where patients connect with experts and patients, is changing the cancer doctor-patient relationship. While there may be some doctors who still tell their patients to avoid going on the Internet, many patients, fortunately, have a mind of their own, and they are finding useful information.

Some key findings:

  • 90% of survey respondents say they have discussed what they learned online with their doctor
  • 19% said what they learned online added new options to the discussion
  • 15% said that discussion led to a change in their treatment plan
  • 43% said they felt more confident in discussions with their doctor because of the knowledge they had gained online

Of course, as a patient advocate, I am thrilled. I KNOW I have received better care for two cancers, CLL and myelofibrosis, because I’ve become an informed, savvy patient and because I’ve asked questions. I have received personalized cancer care because I have advocated for myself, and I am convinced my health is better because of it.

I am also thrilled, of course, that survey respondents ranked PatientPower.info, by far, as their #1 online resource with 80% of them searching for new information at least weekly.

What is happening today is that more patients are going the extra mile and learning about their cancer and speaking up with their doctor about it. If the doctor “blows them off,” more of them are finding another doctor. Today, we patients are commanding respect. If we don’t get it, many of us walk out the door.

To be fair, I have found the top doctors are totally in sync with this. They want smarter patients. They want to discuss research progress, clinical trials and long-term treatment planning. They want to discuss management of side effects. They want to discuss helping us improve our quality of life. That is what our survey respondents expect. And the growing number of people like this will force more doctors, clinics, and hospitals to line up with a true patient-first model, not the hollow one that has been in vogue in recent years as a marketing ploy.

My belief is the effect of patients who speak with their cancer doctor about what they learn from Patient Power and other credible sites is far reaching. Doctors are learning from us as we bring up what we’ve learned online, often from world experts. The afterglow of what we discuss in the exam room, I believe, helps those less engaged patients with appointments that follow. Our discussions get doctors thinking. And the experience they gain with us, often opting for leading-edge treatments, gives them experience – perhaps in an accelerated way – to help others.

We’ll see how all this shakes out in cancer areas where, I am happy to say, there are now many emerging options. Do patients who are self-advocates accelerate positive change in the practice of cancer care? I think so.

What are your thoughts? And, if you participated in our survey, thanks for being our partner in the effort to produce positive change in cancer care that benefits us all.

Look for more survey results coming soon, including a closer look at how people responded with specific cancer types. This is part of our effort to understanding our audiences better and provide insights, so we all can do a better job.

Wishing you and your family the best of health!

Andrew

cancer patient / shutterstock

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