What should patients know about their disease?

A recent survey by the Dana-Farber Cancer Institute showed that many women who had surgery for their breast cancer did not know basic facts about their own tumour, such as their HER2 status, their ER status, their tumour stage and grade. @DanaFarber

The lead author of the study, Dr. Rachel Freedman, expressed surprise and concern at these results.

http://www.dana-farber.org/Newsroom/News-Releases/many-women-lack-basic-understanding-of-their-breast-cancer-study-finds.aspx

Why should patients know or care about these things? I have been immersed in the field of healthcare and pharmaceutical market research for more than ten years, but when it comes to my own health, I find I am not really interested in learning about the intricate details of my ailments.

Professionally, I often talk with physicians who make treatment decisions on life-threatening diseases and marketing executives from pharmaceutical companies who promote therapies to treat these diseases. Both of these groups focus a great deal on the minute differences between this drug and that, between different genetic mutations and cellular targets and markers that guide therapy choices. This knowledge is essential to their livelihood and their job. Should it be essential for patients as well?

Let’s draw an analogy to other areas of life.

When my car breaks down I bring it to the mechanic. What I am most interested in is: A) How serious is it? B) Is it fixable? C) How much will it cost to fix it and how much time will it take? I believe the mechanic to have all the knowledge about the different parts in my car and the tools that are needed to fix them, should they break down. I trust my mechanic to give me an honest assessment of the damage and the different options for repairing it (yes, I have an honest one). I don’t need to know anything else. Why should it be different for medicine?

DSC_0651

Or here’s another one:

When I decide whether to buy an Apple smartwatch or a Samsung Gear, I base my decision on things like what apps they offer, how the screen is laid out and which smart gestures they support. How the people at Apple or Samsung get the watch to have these features is irrelevant for me. All I care about is what I can and cannot do with the watch. And whether it looks cool. And how much it costs.

Samsung Gear S

And now back to medicine:

Is it fixable or will I die (soon)? How long do I need to take this therapy for? Will it make me nauseous? Does my insurance cover it? Will it prolong my life? How much of a hassle is it to take it? These are the types of questions that are relevant for a patient.

That’s hard to understand for someone who is focused on the science of medicine. But healthcare is more than science. Extending someone’s life or halting disease progression are only surrogate endpoints. The real endpoints are enabling patients to lead the life that they want, how they want it. These endpoints are, of course, immeasurable.

On Chemotherapy

My friend had breast cancer twenty years ago. After surgery and radiation, she has been in remission and free of health complaints. Now that she is almost 80 years old, another lump was found in the same breast. She has access to excellent medical care, and she was given the following advice:

While the lump was small, she should have a mastectomy, just in case. As she was not eligible for another round of radiation therapy, it was recommended that she go through chemotherapy, because physiologically, she was deemed to be perhaps ten years younger than her actual age.

This is typical advice to elderly adults who are in good physical shape. It is based on the assumption that adding years to your life trumps every other consideration, provided you are in good health otherwise.

At age 80, how long does the average person have to live? Two years, five years, ten years tops? With all advances in medicine, we have not managed to extend life much beyond that. We are getting more and more people to reach their eighties, but we are not living significantly longer than that.

My friend was struggling with the advice she was given, and what was presented to her as the best medical solution. She did not want to lose her breast, and she did not want to put up with the side effects of chemotherapy. So she tried hard to find second and third opinions to support the view that it was not absolutely necessary to conduct a mastectomy and chemotherapy, and that she was not carelessly jeopardizing her chances of survival by refusing these options.

As we spoke about the different considerations that come into play in these decisions, she kept saying “I will get chemotherapy if I have to, but I’d rather not”. To me, this indicated an obligation that she felt to justify her choices to her friends and family, and perhaps to her medical advisors. Nobody wants to be seen as reckless with regard to one’s own health.

However, isn’t that bizarre and plain wrong? A person’s life is a person’s life, and having a lump in your breast is just one of many things you will consider and care about. So a woman who has carried two breasts through her entire life wants her life to end with both of them in place. So a woman who may have five, six or seven more years to live, probably deteriorating progressively as she ages, does not want to ruin her sense of well-being right now with an aggressive therapy regimen. So what?

Why is she made to feel guilty or irresponsible? Why does she need to justify her course of action?

It is understandable that friends and family of a person in this situation may advocate the more aggressive therapy, as they may fear losing this person. Fair enough.

However, it is my view that medical professionals should state very clearly that the choice is entirely up to the patient, that every choice has its trade-offs and that an informed choice, whatever it is, represents a responsible and acceptable way of managing one’s health. To have this sort of back-up from the medical community would make dealing with a difficult situation easier for the patient.

Personalized, patient-centric medicine

Much has been published lately about personalized medicine. The other, similar buzzword is patient-centric.

It seems to me that in these terms, consultants and trend-spotters mesh together two very different ideas, each with associated with different strategic implications.

Personalized medicine in the sense of using biomarkers and genetic information to target therapies more specifically to patients who are more likely to respond to them is an approach that many pharmaceutical companies are embracing.

However, in this context the patient as a person has very little relevance for the R&D process and the commercialization of new products. What he or she feels, thinks, believes or does is unrelated to the peculiar genetic mutation that makes him or her a good candidate for a specific drug.

The second trend, namely focusing on the patient as a person, does not usually play a role in drug discovery. Pharmaceutical companies commonly find themselves in the situation that their compound is the third or fourth me-too agent to market with little incremental benefit. Identifying and targeting a specific patient with distinctive attitudes, behaviours and needs can be a successful marketing strategy in an undifferentiated market.

And while some companies may strive to bring both approaches closer together – understanding the patient as a person and developing new molecules that meet the patient’s specific needs – this is far more difficult to achieve in pharmaceutical product development than in the area of consumer goods.