Understanding Clinical Research

If you’ve had cancer, you know that the information presented to you following your diagnosis is like a crash course in medicine.

All of a sudden you’re hit with explanations of complex bodily processes, unpronounceable medicine names, and a deluge of statistics. You need to digest all of that and agree to a specific treatment plan, of which there may be several for your type of cancer. It can be overwhelming. But then again, what about cancer isn’t?

Okay, but what does it all mean?

Making the “right” decision for you can be difficult. Many of us gravitate to the Internet for information, but that can be a minefield of questionable value. With some luck, we eventually get to PubMed, which is Ground Zero for medical information. PubMed is the National Institutes of Health’s (NIH) database of published research on a variety of topics. These articles focus on biomedical fields, but the range is quite broad.

There, you can find the background information for the treatment decisions that your oncologist has made about your specific situation.

I would venture that bringing a relevant scientific article to your oncological appointment beats mentioning an ad for a new medicine where the announcer says, “ask your doctor if [insert med name here] is right for you”. But of course the commercial is easier to understand, while the research article is written in “science-ese”.

So, if there’s something that can serve as a true ally as you navigate through your cancer experience, it’s being science-literate. That doesn’t mean you need a PhD in some medical research field. But it does mean understanding how researchers set up experiments, what they’re actually studying, and whether those results are valid for your situation. And then being able to search through clinical studies and see whether they can inform your decisions on cancer treatments.

For digging deeper into the specifics surrounding clinical research, I highly recommend Coursera’s free class, “Understanding Medical Research: Your Facebook Friend Is Wrong.” I use PubMed at work and have studied research design in Psychology, but I realized that I needed a crash course in evaluating clinical studies if I wanted to use scientific literature to make informed decisions about my health. “Understanding Medical Research” is an excellent survey of the types of studies out there, basic research design, terminology, relevant statistics and how to judge whether the study is useful for your personal situation, not to mention warning flags to watch out for.

Dr. F. Perry Wilson teaches the Coursera class, “Understanding Medical Research: Your Facebook Friend Is Wrong.”

The course is free if you don’t need the Coursera certificate. And the instructor, nephrologist F. Perry Wilson, MD from the Yale School of Medicine, is entertaining and occasionally silly, making what could be a dry subject much more palatable.

This might not be the first online class that you’ll want to tackle right after your cancer diagnosis. For that, I would highly recommend seeking out a mindfulness meditation class. But after you’ve gotten relaxation skills under your belt, learning about how to access medical literature and decipher the results may be one of the most important things you can do for yourself.

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If you’re not ready to commit to a course on understanding medical research, below are two informational links that can still get you on your way to figuring out what all the research means:

The National Cancer Institute (NCI) has a blog that explains findings from the latest cancer studies in lay terms, called “Cancer Currents”. The sidebar on the right allows you to zero in on more specific topics. This is the most science-based information that you can get on cancer, keeping in mind that studies can only speak to what they have specifically been designed to research.

For some general information on clinical studies, NIH’s webpage on “Understanding Clinical Studies” is a good place to start. This is a one-page easy read with a infographic that explains basic facts about clinical studies.

Regaining Control Through Mindful Living

As I mentioned in a previous post, I’ve really enjoyed the Coursera course, “Engineering Health: Introduction to Yoga and Physiology“, which I highly recommend. One of the recurring themes of the class that I’ve found particularly relevant is that of effecting incremental and meaningful epigenetic change through yoga and meditation.

The class lectures went through the physiological mechanisms by which this happens, and this information would be reason enough to incorporate mindfulness and breath-to-movement in one’s life. But for someone who’s experienced cancer, there’s something even more important: a sense of control.

For me, the most terrifying part of my cancer diagnosis was the lack of control over what was happening to me. First, my body had turned on me by cultivating a tumor, the ultimate goal of which was to take over my organs and kill me. Then, my doctors were giving me drugs that by design would kill certain parts of me, with the intention of taking out the tumor before it spread to really important parts of me (brain? liver? heart?).

My body was a battleground in the war between my rogue cells and modern medicine. I had to sit there and take collateral damage if I wanted a chance at survival.

Disclaimer: So I feel the need to stress here that we do not yet know how to reliably prevent the formation of cancerous tumors, but there are things that we can do to greatly lessen the risk. I’m willing to bet that managing stress would have a powerful impact on prevention.

While I did begin meditation at that time, had I started learning to deal with my anxiety and accompanying physiological responses years ago, I might have been able to sidestep the disease. There is science to this which I will cover in a later post, but my doctors *hate* it when I postulate possible causes of my tumor since if we could truly pinpoint the cause, we’d be able to cure the disease. However, given what we do know about stress and inflammation, I can guarantee that my stress response did not help in keeping me cancer-free!

In the Coursera class, Dr. Ali Seidenstein (NYU) explains, among other things, how the small positive changes that arise from learning to control the stress response by applying yoga and meditation affect your genetics. And this is key. While you’re born with a certain set of genes, the science of epigenetics describes how you can affect gene activity (think, turning a gene on or off) and thereby have a different outcome from someone else with the same gene.

Finally! Something that *I* can do that provides a rare sense of control in an uncontrollable situation! For a cancer survivor, this offers a nugget of hope to hold on to in the face of continuing medications that may or may not help your survival. Medicine is tested on a variety of individuals but there’s no guarantee that their success will translate into your own (news flash: cancer = no guarantees, period). But knowing that you can engage in behaviors that, when applied over time, will actually benefit you on a genetic level…that, my friends, is priceless.

Online Classes: Yoga and Science – Putting It All Together

Please note: I’ve included links to various items below, none of which I’m compensated for. If I’m writing about them, it’s because I think they’re excellent and worth recommending to others.

In my never-ending quest to bring more peace into my life, and with the extra time I’ve found in COVID-19 lockdown, I’ve been taking advantage of online class on platforms such as edX and Coursera, and have been impressed with the breadth of courses that are available.

Currently, I’m mid-way through a class on Coursera from New York University (NYU) connecting yoga and science, called “Engineering Health: An Introduction to Yoga and Physiology,” and I am thoroughly enjoying it. This class can be audited for free, or $49 gets you access to the quizzes, a certificate once you’re done (that can be posted on LinkedIn) and no time limit on access to the materials.

The course is taught mainly by three individuals: (1) Prof. Alexandra (Ali) Seidenstein, lecturer and research scientist in the Chemical and Biomolecular Engineering Department at NYU, who is also a yoga teacher; (2) Eddie Stern, NYC-area yoga teacher and author, co-founder of the international Yoga and Science Conference and creator (along with Deepak Chopra, Sergey Varichev and musician Moby) of the highly-rated Breathing App for mobile devices; and (3) Prof. Tommy Lee, senior lecturer in the Chemical and Biomolecular Engineering Department at NYU. In addition, there are interviews with other scientists who have studied or made use of yoga in their research. For me, as someone who’s always looking for scientific validation, this combination of yoga and physiology is very gratifying.

First and foremost, the class teaches basic physiology. If you took survey classes in high school and college, the material will be familiar, and it’s presented in a clear manner with lots of visuals. Topics include physiological systems such as nervous, respiratory, cardiovascular, immune, digestive and much more. Additionally, there are discussions of homeostasis, epigenetics, and the effect of stress on human physiology.

As a cancer survivor, I find it so empowering to see the science behind how yoga affects my physiology, especially strengthening my immune system!

But woven in between all of these topics are instructions on breathwork and yoga movements for beginners, and this is what really ties the course together for me. The yoga is expertly taught by Eddie and Ali, both of whom make the experience very positive and not intimidating. With each lesson, they take the time to connect the physiology topics with what is being taught in the yoga class. This is a novel approach that I have found very empowering: there is a direct link between the work being done in the yoga lessons with functioning of the body.

For me, making that connection leads to a sense of self-efficacy and patience with myself, as it is with consistency of practice that we make change. Even more than that is the feeling that I can affect my immunity against disease (and cancer?) by keeping my stress levels in check. I have always felt that stress played a role in the development of my cancer, and although I cannot prove this, knowing that there is good science behind using such relaxation techniques as yoga and meditation in prevention of inflammation and subsequent disease gives me a sense of control in a situation that has often felt completely outside my control.

As mentioned, I am only at the midpoint of this class. I look forward to the second half and will report back about my overall impression once I am finished. In the meantime, if this post has piqued your interest, I highly encourage you to check the class out!

Paying a Compliment, the Happiest Transaction

~There are precious things that cost nothing.~

I’m currently taking a class via Coursera.org by Prof. Laurie Santos of Yale entitled, “The Science of Well-Being“, which I expect to cover in more depth in a future post.

The purpose of the class is to present research on happiness, why we don’t have it (the things we think will make us happy, don’t) and how we can get it (what actually makes us happy may be surprising).

Of the many studies that Dr. Santos discusses, one in particular caught my interest. University of Chicago researcher Nicholas Epley investigated the impact that social connections have on our happiness (“Mistakenly seeking solitude“). Briefly, he found that individuals who made even superficial contact with someone else during their commute to work on a train not only felt happier, but the person with whom they struck up a conversation likewise felt happier that day.

Making an effort to bridge the gap between us benefits everyone.

But this can be uncomfortable to do. Quite often, people taking public transport keep to themselves. Even if we know that striking up a conversation might be pleasant – and even increase our happiness – we may feel too self-conscious to engage with a stranger.

This made me think: some of the most rewarding interactions that I’ve had with strangers have consisted of merely eliciting a smile from them. That is a very brief connection with another human that ends up bringing both of us joy.

And the best way to do that? Pay them a compliment. I have been gifted with the most beautiful and sincere smiles from others by complimenting them on something about them that was genuinely laudable, resulting in good feelings that last an unexpectedly long time. Try it and see!

This world needs more diverse people finding common connections with each other.

Furthermore, when you open yourself to finding something to compliment about another person, it is amazing how quickly you can locate it. Your eyes see things more brightly and happily, and that feeling is passed on to your recipient along with your kind words.

Then, if their smiles last long enough for their good mood to positively benefit someone else, perhaps that simple act of a compliment can send a ripple that becomes something so much bigger.

What a lovely gift to the world.