Patient Engagement: Information is the Drug

patient engagement


When Kiran, a lymphoma patient, relapsed a third time, his specialist and medical oncologist could not agree on a new therapy direction. It was left to Kiran to choose his therapy option.

This could happen to you, too. If you are not an informed patient, and you are asked to choose your treatment option, it is likely that you may not be aware of all the options, and you could choose a less effective direction. Someone in a small town, not seeing a specialist or taking part in his or her therapy decisions, may not even suspect that there is more than one direction to go. The doctor will simply tell them that he or she is prescribing a new drug.

“Some patients can’t even name the chemotherapy they’re on,” says Kiran.

That’s fine, as long as nothing goes wrong. But, I’m not comfortable with a medical oncologist using his smartphone to skim through a couple of therapy reviews, then prescribing a drug combination that he may have no experience administering.

Kiran is an active participant in his treatment and talks to his doctors to know why a treatment regimen is chosen and how it will benefit him. Not only does he keep himself informed, he also shares this information with others. All this helped him live ten years more than what was predicted during diagnosis.

And, it makes me happy to know that Kiran is not an exception. I come across many others who are dealing with cancer with a powerful tool called information.

Another classic example of informed patients and caregivers making a difference is the thalidomide-myeloma story from the US. Thalidomide is a targeted therapy usually taken with other chemotherapy drugs for the treatment of multiple myeloma, a rare form of plasma cell cancer.

More than 20 years ago, the wife of a myeloma patient met Dr Bart Barlogie of University of Arkansas for Medical Sciences. Her husband’s myeloma was not responding to standard treatment and she requested Barlogie to use thalidomide (then used to treat leprosy) for her husband—it was found to be effective in treating myeloma in rats. Barlogie did, and the rest is history. We now have thalidomide and its analogues lenalidomide (Revlimid), pomalidomide (Pomalyst—not yet available in India), which are remarkably effective drugs. All this happened because a patient’s family member asked the oncologist: “Hey, do you know about this?” And the oncologist was humble enough to say: “No, let’s try it.”

That one caregiver made a difference to thousands of myeloma patients all over the world.

Doctors and oncologists are also encouraging patients to be more involved in treatment decisions. At a recently held international conference, attending oncologists echoed the same sentiment when they asked patients “to take charge of your health and ask questions”, because not every oncologist is up-to-date second by second on all of the breathtaking advances.

Patients ought to make sure that they ask questions and not be shy about doing it because, if they don’t ask the questions, nobody else will.

Every year, more than ten lakh people are diagnosed with cancer in India and this number is expected to increase five-fold in the next ten years. We need a whole army of informed cancer patients and survivors to work alongside the oncologists if we are to overpower and be triumphant in this battle against cancer.

Where to begin?

The moment when you are diagnosed with cancer can be very daunting. And, invariably, the best resource at the time would be the oncologist. But, doctors are a busy lot and the information may not be sufficient to make that pivotal decision.

In order to be empowered, patients, family members and caregivers should educate themselves about the condition. Understanding what to expect is vital to making an informed decision. So, know the drugs and treatments available, the centres offering treatments, the insurance facilities and the research being conducted. Access to the internet, news media and public health initiatives can help a great deal in gathering and understanding information. Listen to national and international doctors on podcasts and webinars.

A lot is happening in cancer research and there may be a new treatment that can add those extra years to your life. Be aware, learn, connect, network, start a conversation about your condition and ask the questions.

This article was first published in The Week magazine dated March 27, 2016 under the title, Information is Drug.



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