Journalism and the Scientific Method

Three years ago, I reviewed Seth Mnookin’s book The Panic Virus. In that review, I noted the importance of science reporting in assisting the public’s understanding of scientific research and science in general. Keeping this in mind, I want to highlight an article from the Ottawa Citizen by Elizabeth Payne, a Postmedia health reporter. The article addresses the question, “Could infections cause Alzheimer’s?”

In her article, Payne considers the controversy about the link between microbes and Alzheimer’s disease. She reports that those scientists who favour the microbe hypothesis have made a widespread plea that the public “embrace” their hypothesis.

Payne’s reporting is factual and clear. It leaves the reader with the opportunity to consider whether the microbe hypothesis research supporters or the plague hypothesis supporters are more credible. It calls upon us implicitly to consider both theories, but to remain open to the results of the ongoing research on Alzheimer’s disease. To be open to possibility, to be able to assess alternatives as revealed by rigorous study, is the essence of science. Through her reporting, which points out the conundrum of a controversy in scientific research, Ms. Payne makes it clear why the public should not, in fact, “embrace” a hypothesis until the research and much more consideration yield a clear result.

I am a clinician, not a researcher, but I work in a university teaching hospital affiliated with a research institute and so I have participated in clinical studies. When focused on one’s own research study, it is easy for a researcher to become attached to trends that one believes are emerging from one’s research. I have done enough research to realize how dangerous this is. I have learned that one must be faithful to the scientific method that has fostered the real breakthroughs.

The scientific method is systematic and allows for the modification of the hypothesis. Learning the scientific method is one of the first lessons in science class in elementary school. I remember having to devise experiments in Grade 3, not for a science fair project or research but to demonstrate that I understood the scientific method. That same lesson was repeated at the beginning of many grade school science classes for years to come. The scientific method is fundamental but, like all fundamentals, it is more easily expressed than understood. Ms. Payne’s excellent article reported some news from medical science and reminded us of how difficult it is to learn the scientific method.

(Note: The excellent graphic depicting the Scientific Method included here comes from the Science Buddies Website. Science Buddies is an award-winning, not-for-profit organization dedicated to building scientific literacy.)

My Expertise in Bad News

Most writers love to have a piece that people read over and over and, in general, I am the same way. Having said this, my second most popular blog, which is published on The Scientific Parent website http://thescientificparent.org/, has been reposted and read more often that I ever wanted or would like.

The particular blog is a piece that I wrote for The Scientific Parent at the time of the Lafayette Theatre shooting in July 2015. Almost a year has past and this post has been republished and read so often that it is becoming disconcerting. To me, it emphasizes how often the news is so terrible that we have to worry about its impact on children. We also have to wonder how much to tell children and how much we should try to protect them from seeing or hearing.

I will let you read the piece and use what is useful to you within it, but I want to reflect on some of the times in just this past year when you might have been able to use this little guide on talking to children about terrible events.

Here’s a short list off the top of my head, in no particular order of some of the issues that distressed the youth in my practice, before today’s shootings in Orlando:

  1. Mass Shootings: There are an average of 1 per day in the United States, all of them get coverage and so young people can always find one where the circumstances relate to their situation.
  2. The Paris Attacks in November 2015.
  3. The Refugee Crisis, in Europe especially but also around the world.
  4. The abduction of girls and women by Boko Haram.
  5. The Brussels Attack.
  6. The Attawapiskat Suicide Crisis.
  7. The Fort McMurray Fires and Evacuation.
  8. The attacks in Tel Aviv.

I see only adolescents in my practice. Even though they have mental health problems, like all adolescents they want to change the world. In fact, when they begin to feel better, many of my patients have a new found optimism that they will be able to make a difference. When I wrote this piece for The Scientific Parent, I thought about the advice I have given that people told me was most effective. I am pleased that this advice is useful since I want children and youth to be able to see past these tragic events to a better time.

With that in mind, I left out one piece of advice in that article: the advice to share with them the positive aftermaths of people and communities coming together to heal and care for those affected. Fortunately, these are as certain as the tragedies themselves so watch for them and celebrate them with children. Research tells us that to be hopeful and optimistic begets resilience. In this difficult world, we need to help build resilience.

 

 

A book that rethinks cancer

Book: Malignant Metaphor: Confronting Cancer Myths by Alanna Mitchell (Toronto: ECW Press, 2015)

Cancer is one of the mythological illnesses and in this spare, riveting book Alanna Mitchell confronts the myths that surround cancer diagnosis, treatment and living with cancer as few writers have done. To do this she uses the premise provided by Susan Sontag in Illness as Metaphor (New York: Farrar, Strauss and Giroux, 1978.) Sontag’s premise is that we build mythologies around illnesses we don’t understand. Cancer is one of these illnesses.

This book is personal. Mitchell follows her brother-in-law’s and her daughter’s journeys with cancer. With dignity and an open mind, she examines the fictions that persist around the diagnosis of cancer and, in particular, that nagging view that, if you have cancer, then you’ve done something wrong. Most poignant was Mitchell’s account of her daughter’s brush with cancer and the myths she immediately encountered:

“Above all, I felt guilt. That it ought to have been me…That I ought to have been able to forestall this somehow…I replayed every second of her childhood that I could remember, wondering what I had done to fail her in this way.” (p. 155)

What is most important about Mitchell’s book is that the science is so thoroughly explored. She does a very credible job of examining what science exists around the homeopathic and naturopathic treatments of cancer. However, she also examines the most prevalent metaphor that health care systems and providers use in relation to treatments: the metaphor in which treatment is likened to conflict or a war. We have all heard those metaphors, even use them – fight cancer, combat heart disease, an arsenal of treatments.

How does the war metaphor benefit the treatment of cancer? Does it give us the energy to cope with the rounds of investigations, treatments, hospitalizations? Perhaps it does. What this metaphor does not do, however, is help us to understand the randomness of cancer in many cases. Cancer sometimes strikes out of the blue. We all know people who have no family history of cancer, who live healthy lives, eat organic food, exercise, and still get cancer. Do you notice how we seek reasons for these anomalies? Do you see how strongly we believe the myth that science will find all the answers – even when we know there are questions we haven’t even considered?

For the question Does science have the answers? Mitchell makes this point:

“The point is that if you think you can pinpoint the cause, then you can fool yourself into thinking that you can avert the cause. It’s deeply egotistical. It’s life played as a grand insurance policy. Our myth-making around cancer stems from the same impulse. Because we don’t know exactly why most of it happens, we weave a makeshift wisdom around it, a false prophet, which seeps into the common story and feeds our hunger to understand why. The guilt is a byproduct, a way to assign blame and seek absolution. It’s a lesser evil than the forces of randomness. And it gives us the illusion of control.” (p.163)

Mitchell posits that other metaphors might serve us better in our quest to understand our lives in the context of cancer. To me, this may be where other knowledge: literature, philosophy, faith may serve us better in managing disease. We speak of “random acts of kindness” but aspects of all illnesses are random, too.

Think about how so many good events in our lives are seen as serendipitous: falling in love, meeting a best friend, finding the “perfect house”. We don’t seem to agonize over why these things happened. We have a view that the best things are often random. Why can the worst things never be random?

In medicine, our excessive reliance on science (e.g. double blind trials, evidence-based practice) blinds us to the realities that we might confront illness more effectively if we remembered that the root of science is not just science. As Mitchell states: “…dream, experiment, fail and then dream again.” (p. 184)

Trying to understand cancer, or any illness, scientifically fails to help most of us live well with illness. The only thing certain about our lives is death. As the illnesses that will kill us develop, we need metaphors that feed our souls as well as sustain our physical comfort. Death is not our fault.

SoMe: You, Me and Health Care

Have you ever participated in an online event? If not, let me introduce you to these and consider briefly how such “virtual meetings” might improve the conversations we are all having about health care.

Last Wednesday, I participated in two online events – I can actually say that I participated in both events at the same time. One was an hour long tweet chat from 9-10 pm. This was the weekly @hcsmca tweet chat. You can find out more about this weekly event here along with a very detailed description of how you can join. This online event is held every Wednesday , usually from 1-2 pm Eastern Time. It is held from 9-10 pm Eastern Time the last Wednesday of every month. You can find out what the weekly topic is by following @hcsmca on twitter. The chat is for anyone interested in health care.

The second event I participated in was #BellLetsTalk Day. This event was inaugurated in 2010 as part of an effort to end the stigma surrounding psychiatric illness. Over $6 million was raised this year alone in a twenty-four hour online event. Bell pledged 5 cents for every post, tweet, retweet, text, etc. that contained #BellLetsTalk in the text. Throughout the day, whenever I had a minute, I would generate more retweets and add to conversations. I’ve talked about #BellLetsTalk before, however, so I’m not going to consider it further.

What interests me most about online communication is that it breaks down barriers, allowing me to participate in conversations from the comfort of my own home. I am the kind of person who goes to community meetings and learns so much that I wonder why I don’t go more often. However, I quickly realize that I often don’t feel like battling traffic or weather to get to meetings. Well, there is no need to worry about either at an online meeting. An online meeting is very accessible.

The topics for these meetings can be very timely. For example, the #hcsmca tweet chat last week considered whether health care professionals have the same rights of free speech on social media as other users. This is the summary of the conversation.

The chat considered two blogs, one of which was mine. The comments caused me to consider how I decide what to say and how I express my opinion.  I am as careful as I can be not to release another’s story. On this blog, I always state what permissions I have obtained and note whether the information is already in the public domain. I do try to present views or opinions that have a different angle that those that have already been publicly expressed, but my goal is to do this in such a way as to be heard. I do change my mind when convinced that I have erred or not had all the evidence. Some people seem to more freely express their opinions online than in person, as if it is easier to speak their mind when they do not have to look someone in the eye. This is one of the risks, blurting something out in a tweet.

Personally, I miss people’s reactions, verbal and nonverbal, when I am expressing an opinion. These are communications that I rely on when deciding whether what I am saying makes sense or not. In this respect, social media lets me down. What is not disappointing, however, is being able to discuss a clinical problem from the perspective of patient, care provider, family member and healthcare journalist. There are so many elements of a clinical issue that can be considered in an online forum because literally anyone can participate. Also, if I am reminded of an especially good article or website during an event, I can find it because I have all my own resources at my fingertips. I like that – how often have you wanted to answer someone right away with the research that proves your point?

There is so much potential for social media and the internet in healthcare that I cannot get my head around it. The #hcsmca chat on Wednesdays begins to consider some of that potential. I am finding that the views expressed are helping me to be more informed about healthcare and the internet.

With my new interest, I am reading articles I would never have looked at previously. For example, look at this month’s issue of Daedalus, the Journal of the American Academy of Arts and Sciences, which is entirely devoted to the internet.

Some of the concepts described are so innovative that I can barely understand them but they do convince me that online meetings promote a more thorough consideration of issues than some face-to face meetings. You should join us sometime at the #hcsmca chat and see what I mean.

Book Review – “Universal Foam” by Sidney Perkowitz, Anchor Books, 2000

I cannot even remember how I found this book among the Ottawa Public Library’s lists, but I did and then was attracted to the subject as a matter of science. This is an informative book on an interesting subject that can easily be read on a snowy afternoon – preferably with a cappuccino. You will learn more about foam in those few hours than you ever thought possible. You may even bubble over with enthusiasm and spend another afternoon considering some chapters in greater detail or looking up Perkowitz’s references.

This is a witty, somewhat playful book and it encourages the reader to do what I just did above which is only excusable as an illustration of the properties of foam and its universality in our lives. Perkowitz begins with a description of the basic science of foam and then proceeds to illustrate these properties through considerations of types of foam with which we are all familiar. By beginning with familiar types of foam, the reader visualizes foams properties in the context of a substance she knows well – milk foam on a cappuccino or the foam of a mousse or soufflé. For example, the proteins in milk are the surfactant and heating the milk denatures the protein – breaks apart the bonds of a spherical protein such that it “unravels into long coil-shaped molecules” (page 48). I read those phrases thinking, “That’s how that works.”

From edible foams, Perkowitz moves on to such useful foams as shaving foam and foamed plastic and, again, we learn more properties of foam as they are illustrated in these substances. Then, however, the reader is brought into one of the main premises of Perkowitz’s book: understanding foam helps us to understand life, since the cellular matrix on which all life is based highly resembles foam.

From this consideration of how foam mimics the cellular matrix, Perkowitz begins a discussion of the foams that are present in the earth’s structure: pumice, sea foam. These descriptions allow the reader to consider the “global role of foam and its ties to the innermost and outermost processes of our planet” (page 145).

Perkowitz’s final consideration is of foam beyond the boundaries of earth into our solar system and galaxies beyond. I was fascinated by his account of how panels of aerogel will be deployed by the Stardust spaceship to trap small particles from the coma of the comet WILD-2. These small particles, we are told, “will slam into the aerogel at speeds of 14,000 miles per hour. Among all known materials, aerogel is the only one that can bring these tiny hyperbullets to a screeching halt with little damage.” (page149) Those few trapped particles will be studied to help us learn more about the cosmos.

Apart from the value of foam in learning about the cosmos, Perkowitz ultimately discusses how even the universe is structured like the bubbles of foam, how quanta are related to foam and “how the big bang theory views the cosmos as an expanding bubble of space and time that is now billions of light years across.” (page 157). A physicist himself, Perkowitz often reminds the reader of the tremendous contribution of the 20th century’s iconic physicist, Albert Einstein. Perkowitz’s book, however, brings to mind Einstein’s quote, which example this book follows:

“The eternal mystery of the world is its comprehensibility.”

DSM V and Thomas Szasz

Like many North American Psychiatrists, I have spent a good part of the past six months thinking about DSM V, The new Diagnostic and Statistical Manual of the American Psychiatric Association. Like DSM III and DSM IV before it, the new manual’s publication is giving rise to significant controversy that is likely going to set back the goal of decreasing the stigma surrounding psychiatric illnesses, their treatment, and mental health practitioners. Criticism against the manual is coming from such highly respected organizations as the British Psychological Society.

In reading through some of the negative opinion, I was taken back over thirty years to a time when Thomas Szasz’s The Myth of Mental Illness was causing a sensation among a number of mental health practitioners.  The Myth of Mental Illness was published in 1961 and Szasz was among those who were highly critical of the American Psychiatric Association’s manual:

“It is important to understand clearly that modern psychiatry – and the identification of new psychiatric diseases – began not by identifying such diseases by means of the established methods of pathology, but by creating a new criterion of what constitutes disease…Thus, whereas in modern medicine new diseases were discovered, in modern psychiatry they were invented.” (Italics are Szasz’s)

This is very similar to some of the concerns expressed regarding DSM V, and, behind the debate, one senses the same emotional response that many had to Szasz’s seminal work. At the time, those who included psychiatry as one of the medical sciences could be disturbed by reading Szasz’s work since he expressed so authoritatively exactly the opposite view.

With this in mind, consider this statement from the Open Letter to the DSM-5:

“We thus believe that a move towards biological theory directly contradicts evidence that psychopathology, unlike medical pathology, cannot be reduced to pathognomonic physiological signs or even multiple biomarkers.”

Reference: http://www.ipetitions.com/petition/dsm5/

When I have skimmed DSM V, and read the introduction, I was struck by the expressed strong desire of the authors to address psychiatric diagnosis scientifically. It seemed to me that the intent was that mental illnesses would be illnesses with as much validity as all other medical illnesses, leaving behind the credibility gap of the past, when mental illness, by virtue of being “less worthy” than physical illness, led to stigmatization.

It is a long time since I have thought about Thomas Szasz. To me, he was one of the forces that upheld stigma by emotionally focusing on those circumstances where there were uncertainties in an attempt to persuade that authoritarianism was more important in psychiatry than science. The visceral, emotional reactions to DSM V also seem tinged with belief more than science, if indeed science is an objective pursuit.  Read the Open Letter and then go to The Thomas S. Szasz, M.D. Cybercenter for Liberty and Responsibility ( http://www.szasz.com/) and see how they compare to you.

Women Doctors at the United Nations Commission on the Status of Women

Returning from the 57th Commission of the Status of Women (CSW), as a representative of Medical Women’s International Association (MWIA), and having presented my work on developing resilience in young women, I want to reflect on the role that women doctors have played in women’s empowerment over the past 60 years of participation at the United Nations.

Medical Women’s International Association has been actively involved with the United Nations since the early 1950’s as a Non-Governmental Organization (NGO). The organization maintains official working relations with the World Health Organization, Category II Status with the Economic and Social Council (ECOSOC) and is involved with UNICEF’s Immunization Programs. MWIA has Permanent Representatives in all three United Nations Centres and in New York City and Geneva.

Each year. MWIA brings together a delegation of its members to the UN Commission on the Status of Women in early March. All members of the delegation are self-funded and volunteers. This year’s priority theme was the Prevention and Elimination of Violence Against Women and Girls. Because violence against women and girls is so closely linked to health, as well as empowerment, the contingent of participants was larger than usual and MWIA sponsored three events at the Commission, including one sponsored by the Government of Canada in which the Parliamentary Secretary to the Minister Responsible for the Status of Women, Suzanne Truppe, participated.

In order to understand the accomplishments of the CSW, one has to be aware that the the final outcome is contained in “Agreed Conclusions” reached at the end of the meeting. Last year’s CSW was marred by the fact that negotiations between the various members never reached “Agreed Conclusions”. Because of this, and because of the importance of this year’s priority theme, the atmosphere was tense among NGO’s, all concerned that the same will happen this year. For MWIA, an organization whose members have been working to prevent violence against women and girls since their founding in 1919, “Agreed Conclusions” would assist our members in many countries to promote initiatives and programs of immediate benefit to their patients.

The work of MWIA in the prevention and elimination of violence against women and girls concerns not only the impact of violence on physicial and mental health but also the impact on women’s empowerment. This is of such great importance that women doctors, residents and students presented reports from four of our eight regions to the Commission. The regions included North America, South America, Near East and Africa and the Western Pacific Region. Despite aconomic and cultural differences across these regions, the themes are strikingly similar: the need for women to access good information and appropriate timely care; the need to promote the education and resilience of girls; and the need to combat the significant misinformation and prejudices that still exist with respect to reproductive and mental health. The body of MWIA’s work in these areas can be found on their websie at http://www.mwia.net.

Members of MWIA in all regions are powerful advocates for women’s empowerment in reproductive health and, in fact, one could argue that women physicians’ authoritative voice in reproductive health has ensured that evidence is not forgotten when policy is developed. Like other NGO’s, MWIA is discouraged that policy in reproductive health is so often influenced by cultural myths and not scientific evidence.

For those who have an interest in the draft “Agreed Conclusions”, these can be found at  http://www.un.org/womenwatch/daw/csw/csw57/CSW57_Draft_AC_proposal_presented_by_CSW_Bureau_8_February_2013.pdf.

The presentations of MWIA’s participants can also be found on the MWIA website. Those following this blog will recall that I had asked Dr. Pam Liao to talk about the project between MWIA and Next Gen University that she is developing. This project to develop educational materials garnered much interest both times it was presented. MWIA has developed training manuals previously that have been used to assist health care providers around the world to develop their knowledge and this newer educational model will continue to promote better education for care providers.

As I write this, it is not clear whether this year’s negotiations will actually produce a document of “Agreed Conclusions” but there are a number of member states and NGO’s very determined that Violence Against Women and Girls is such a serious problem worldwide that a unified voice is needed. As the meeting began, 41 member states had already agreed that action must be taken to end violence against women and girls. This is a hopeful sign, especially since both the African and South American States are included in the declarations.

Finally, as I am publishing this on Sunday afternoon when you may have an extra minute or two, I invite you to listen to this song, developed for UN Women and International Women’s Day. Puchase it and promote it, please, to help fund UN Women in its work:http://www.youtube.com/watch?v=Dnq2QeCvwpw