Communication – Perspectives on Health, Technology, and Society

A little over a week ago I had the pleasure of attending the 2^nd Annual Don Rix Distinguished Key Note Address. For those of you not in the know, the ADRDKNA (not a good acronym) started last year as a celebration of the 10-year anniversary of Genome BC. The event is open to anyone who can register early enough. There is free wine (the good stuff too) and free food.

For the first event, last year, Sir Mark Walport from the Wellcome Trust gave an incredible presentation on how advances in genomics can help address the challenges we face in health and sustainability. You can watch is talk here – it is totally worthwhile.

Anyway, the speaker this year was Dr. Leroy Hood who is considered a foundational figure in the world of genomics and proteonomics technology. His talked focused on P4 medicine and its impact on health and society. You can watch his presentation here.

He was not as interesting to listen to as Sir Walport but his topic was really interesting. The idea of P4 Medicine (predictive, preventative, personalized and participatory) really spoke to the tenant’s public health as well as the focus of the social media course I am taking. The other aspect that spoke to me was the systems-level focus of genomics and interactions rather than the focus on single genes.

The shift in thinking that is required to want to prevent disease rather than treat it, to understand that patients have a voice in health, to look upstream – whether it is societal or biological – is massive. One of my favourite parts of his talk was the adamant insistence on democratizing the science and technology of genomics and proteonomics. In other words, no one can own the genome and no one can patent a gene. These gene sequences need to be publicly available to drive research, innovation and over all improvements in health. Open medicine!!

While the topic was interesting, I did have one massive problem with the talk. Despite Dr. Hood’s insistence on democratization and preventative medicine he had very little understanding of the determinants of health. If you watch the Q&A portion of the presentation Dr. Hood starts discussing using this technology to help people understand how their diet influences their blood glucose, cholesterol and overall wellbeing and how that could be used as a prevention for obesity. He then suggests (to my absolute horror) that we should start charging people higher insurance premiums for their poor lifestyle choices.

Now, Dr. Hood is an American and down there health is treated as a commodity rather than a basic human right. Also, Dr. Hood is a geneticist and an entrepreneur, not a public health professional, epidemiologist, or social scientist. Thus, I suppose I should be more understanding of his statement that people should be fiscally punished for their lifestyle choices. Clearly Dr. Hood didn’t understand that often society doesn’t offer the conditions to allow people to make those ‘choices’. Dr. Hood was clearly thinking of his more affluent friends who can afford $1000 protein tests every 6 months and not those in worse socioeconomic conditions who face issues such as a lack of stable income, safe housing, available healthy foods or secure social support networks.

Another issue I had was Dr. Hood’s discussion about this being a participatory process. He didn’t really offer any ways patients could participate and didn’t make any suggestions about how physicians could enable that. Many people during the Q&A brought up issues of physicians using social media and changing the way they interact and empower patients but Dr. Hood was uncomfortable with that technology and had no meaningful comments on this subject.

What I really take home from this presentation were 3 things

We need to teach EVERYONE about the social determinants of health and make sure they understand what contributes to health and limits ‘choices’
We need to do more to help physicians understand how to engage and empower their patients – through social media or any other methods
It’s probably a good thing they serve the wine after the talk.

There is a lot of work to be done folks; we better roll up our sleeves!

“Without partnerships with skilled advocates, epidemiology can be a bit player in debates, rather than able to effectively usher to centre stage evidence-based policies that we would all hope public health policy could be properly built on. Equally, without advocacy the efforts of longitudinal epidemiological efforts can languish in obscure and inward looking academic ghettos and fail to be translated into reforms that can benefit public health.”

Chapman, 2001

“If you’re trying to communicate but you’re not on social media, you’re like a tree falling in an empty forest – yes, you’re making noise, but no one is listening. It’s not much of a dialogue if you’re the only one talking”

Wilcox, 2011

In a 2001 article Simon Chapman explored concepts of advocacy and public health. In it he laments Epidemiologists’ pursuit of influence through publications in ‘high impact’ journals and conference presentations. He, very rightly, makes the suggestion that the effort exerted to influence few is greater than that exerted to reach a broader audience. While Chapman’s article deals with advocacy in a very traditional sense I think his words are very applicable to the the world today and the use of social media by scientists and researchers.

I was fortunate to listen to a presentation by the co-editor of Open Medicine, Dr. Anita Palipu, last week in my Social Media and Health course . Beyond being an accomplished researcher Dr. Palipu was a tireless advocate for open and accessible information. In her talk to us, she really drove home a point that is near and dear to my heart. Public money pays for much of the research that is conducted in our country, however, access to that research is restricted to the select few who have the financial means to do so.

Her words struck very deeply for me. It has always been a great frustration of mine that researchers and scientists are more interested in talking to themselves that to the rest of the world. As Chapman so eloquently put it, they’re stuck in academic ghettos.

It is a known that there exists a gap between the knowledge health in research and knowledge held in clinical practice. To try and address that gap millions of dollars have been poured into Knowledge Exchange, Translation, and Brokering but we’re still not seeing a significant reduction in it. The issue still remains that research is published in inaccessible journals and scientists are resistant to use communication channels outside of those.

A recent blog post by Christine Wilcox in Scientific American was a motivating call-to-arms for scientists to stop making excuses and start using social media. Christine argues that many people in America are science illiterate and if we want them to support (aka FUND) scientific research and vote for scientifically sound policies they need to be better informed. Scientists cannot rely on a journalist without appropriate training to condense their research findings into a 200-word by-line, they need to take responsibility and communicate their research for themselves.

The public needs to feel like they can trust scientists and that trust is currently being eroded a lack of transparency and dialogue. Part of that erosion has occured because of the notion that publishing in top-tier journals is the only way to communicate information, unfortunately those journals place both financial and jargon barrier that prevent people from accessing and understanding the information within. Scientists need to open a dialogue and they can do that using social media.

Another great blog posted by Inger Mewburn ponders the potential of a digital divide between those who adopt social media and those who reject it. The author muses that it while some in her academic circle mock social media as a waste of time and a fruitless pursuit the medium has actually served to enhance and flourish her professional network. She cheekily makes the suggestion that the professional network she built using social media is richer and more complex than those built by older faculty through years of schleping to conferences.

At the end of the day science needs funding to survive, that funding often comes from public coffers. If people cannot see the value, benefit, or purpose of the research they’re not going to care and they’re not going to fund it. We cannot hang onto the old ways of doing things. Regardless of the medium scientists need to stop talking to themselves and start sharing their ideas with the world. The world is changing rapidly and science better keep up or it’s going to be left behind.

References & Links

Chapman, S. (2001). Advocacy in public health: Roles and challenges. International Journal of Epidemiology, 30, 1226-1232.
Wilcox, C. (2011, September 27). Social Media for Scientists Part 1: It’s Our Job. Scientific Amercian. Retrieved from http://blogs.scientificamerican.com/science-sushi/2011/09/27/social-media-for-scientists-part-1-its-our-job/
Mewburn, I. (2011, September 1). Inger Mewburn – Is There a New Digital Divide Brewing? Networked Researcher. Retrieved from http://www.networkedresearcher.co.uk/2011/09/01/inger-mewburn-is-there-a-new-digital-divide-brewing/

PS: I don’t think these guys will be left behind…