Perspectives on Health, Technology, and Society

We attended a funeral today, very dear friends of ours lost their mother.

The funeral was difficult for us to attend for a number of reasons. First and foremost, it was hard to see such good friends in so much pain. They adored their mother and she was clearly a bright light in a very incredible family. We both feel such sadness for their loss, she was young and had a lot of life left to live.

It was also difficult as it brought back very painful memories of loved ones we had lost. Boyfriend lost is father very suddenly in 2002 and I lost my grandmother in 2008. Interestingly enough, the funeral was held in the same location that our loved ones’ were so there was a great challenge in just being at the same place. We were both flooded with memories of those days, memories we had pushed aside as part of the normal effort to move forward in life.

I’ve had the day to reflect on what transpired and had some observations.

We found out the news on Friday, through Facebook. The siblings posted a heart-felt message about their mother which, obviously, displayed on our newsfeed. As the message spread through their social network, friends and family began posting condolences through comments on the original message or as independent messages. Our friends continued to share their grief, their memories and their appreciation through Facebook. It gave us an opportunity to feel connected to them and feel like we were there to support them through such an incredibly difficult time. I hope that it also helped them feel connected to us, that we were genuinely there for them and that we cared.

In 2002 Facebook wasn’t around and in 2008 I had just joined it. For both Boyfriend and I, there was no vehicle to share our grief in such a public way. We chatted about this in the car ride home and wondered – if Facebook was around, would we have shared?

His answer was probably not. He tends to be a deeply private person and shares very little of his personal life, even with those close to him. He said that he would have shared information about the funeral and its location but very little else.

My answer was probably yes. I have a large extended family on Facebook and just communications with them would have involved sharing my grandmother’s passing. I am also a more open person about my life and think that I would be more inclined to grieve openly.

So my question then becomes, why do people share their grief on Facebook and other social media outlets?

Time Magazine ran an article in January 2010 discussing this issue. They suggest that social media offers an opportunity to connect in a very physically disconnected world, allowing people to come together and share their condolences even if on the other side of the world. It also enables people to become more open about death and the grieving process which further normalizes the healthy outlet of emotions.

Now a days, it is common to see ‘In Memoriam’  or ‘RIP’ pages on Facebook dedicated to individuals who have died. These pages provide a space for mourners to gather virtually and share their love and memories of the person who is lost. Cynics will say that these efforts are shallow and meaningless but I don’t think so. Seeing the genuine outpouring of love for our friends doesn’t seem artificial to me, I think it has provided them with immense comfort – at least I hope it has.

Ours is a society that shares everything now. Social media has provided us with an outlet for the best and worst in our lives. Many of us now live halfway between the real and digital world. Dan Hooker (@danhooker) provided us with a presentation a couple of weeks ago that used the term ‘liminal space’; an in-between world, both completely real and completely artificial at the same time.

So I think that people share their grief on Facebook simply because they share everything else on there. I don’t think they do it to actively seek any benefit, but I think they do receive it regardless.

It will be interesting to see how social media will continue to both integrate itself within and change our customs and norms. Until then, my heart goes out to my friends and wish them happiness and peace.

Canadian scientists are in dire straits. They are faced with dwindling funding for training and research, a government which chooses to muzzle and undermine them, and a public that cares more about housewives in Atlanta than the state of Canadian innovation. This problem extends well past our borders. Many developed nations, faced with obscene national deficits, choose science as one of their first line-items to slash. Public resistance to those types of budget cuts are muted at best and, frankly, understandable. Why would people want to fund research when they don’t understand it, don’t see the value/application of it, and see scientists as disengaged and aloof???

Science has huge PR issues and I’ve discussed this in a prior post. There are solutions that scientists could implement that may help their position, however, I’ve come to the conclusion that they cannot begin to engage the public until they learn to engage each other – specifically in the realm of academia.

The way things work in the academic world is broken. Fighting for ever dwindling funds and elusive tenured positions, academic researchers are forced to focus exclusively on publishing in ‘high-impact’ journals. The publishing regime that currently exists is extremely flawed. Originally used as a platform for communication between scientists, for-profit journals have become academic ghettos where information is difficult to access, difficult to find, and nearly impossible to share. There are over 24,000 journals today and information – regardless of its importance or significance – gets lost in the cacophony. The pressure to stand out from the crowd has lead to a positive-findings bias in reporting, such that studies demonstrating null or negative outcomes are not getting published. This bias is detrimental to the research world as knowing what doesn’t work is just as valuable as knowing what does.

The worst part of this system is that publicly funded research gets sequestered into for-profit journals and the public is forced to pay again to access the information within them. Universities pay millions of dollars to access these journals, that funding often comes from government agencies and internal revenue. Often larger universities have larger budgets and can afford more access and those without the means cannot. The public rarely benefits from the research their taxes served to fund because of this restrictive access. That is height if inequity and speaks volumes on why the public doesn’t want to fund science.

Another issue is that scientists are also highly paranoid; most researchers I know are very testy about sharing their findings, discussing their methods, or even asking for advice from other researchers. This kind of insular thinking limits the growth of the field and cements the impression that scientists are out-of-touch and self-interested. The same pressure to publish and to make tenure pushes researchers to become fearful of being ‘scooped’ and limits their collaborative efforts. In addition, the time and energy committed to the publishing/tenure focus limits the ability for scientists to provide their expertise to open science initiatives. Think of how much time and effort a researcher could save if they were willing to discuss their methods, what they’ve tried and not and how things are working.

Despite this bleak outlook, there are signs things are changing. Open access journals are becoming more prominent, scientists and science commentators are starting to openly critique the current system, and the concept of open science is catching on (see video below). I genuinely believe that the tools of social media have contributed to this shift. It has allowed scientists to openly share their perspectives more easily, it provides tools for collaboration, and enables lower-cost and lower-effort publishing using open-source software that circumvents the traditional system. For this change to take hold and take over there are a few things that need to happen: researchers and their universities need to be more open to changing the existing publishing/tenure process and researchers need to start trusting and supporting each other rather than competing.

Obviously here are other large policy issues that need to be addressed as well as PR problems to be overcome but if scientists and researchers can work together they can use their collective voice to amplify their cause and affect change.

For more information on these topics there are 2 talks posted below;

• This great presentation by Ben Goldacre really highlights the problem with bad science (it’s not all bad, I think the so-called peer-review system is bad and needs overhauling):
• This is a thought-provoking talk on the topic of open science by Michael Nielson can be viewed here:

Finally – this is my FAVORITE visualization of how science actually works. I think it really speaks to why some misconceptions about it exist.

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

1. We need to teach EVERYONE about the social determinants of health and make sure they understand what contributes to health and limits ‘choices’
2. We need to do more to help physicians understand how to engage and empower their patients – through social media or any other methods
3. 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!

On October 23, 2011 the people of Tunisia did something that we Canadians take for granted. They voted.

Over 90% of registered voters came out to participate in the first democratic election held since the dramatic revolts that ousted dictator Zine El Abedine Ben Ali. (Granted only 4.1 of 7 million eligible voters were registered). These revolts also sparked a political awakenning in the Arab world that is now referred to as the Arab Spring.

I recently had the pleasure of watched a great documentary on CBC’s Passionate Eye on the Arab Spring and the role of Facebook (and other social media) in it. I would HIGHLY recommend watching this documentary as it effectively outlines how this revolution came to be and interviews some of the key activists behind it. I won’t go into great detail in this blog post about the Arab Spring but I will say that these events have a strange personal connection for me.

Last year, boyfriend and I were planning on travelling to Jordan and Egypt in February. We were quite deep into our planning when we caught wind of the political instability in Tunisia. We then started to hear about protests in Egypt. We made a last-minute decision to ditch the trip and go to Hawaii instead. During the 2 weeks we were on our trip we followed every detail about the fall of Mubarak. We kept comparing our original itinerary to what was going on in Egypt. The day of the Camel Battle we would have been in Cairo. We would have also been there for the day Mubarak stepped down.

To know that we were so close, and yet so far, from such profound historic moments definitely sticks with me.

The purpose of this post is to begin to explore the role of social media in social revolutions and how that can impact health. Full disclosure: I’m going to be writing my final paper for SPPH 581H on this subject and am going to use my blog as a tool to do research.

Tunisia is actually a really interesting country to use to begin my exploration. Under the rule of Ben Ali, Tunisia focused heavily on foreign investment and tripled its GDP. Unfortunately that economic growth didn’t translate into wealth or happiness for all of the Tunisian people. Even implementing efforts to reduce poverty did not help as Tunisia suffered from high levels of unemployment, particularly amongst its youth. It was this, along with gross corruption and excessive media control that contributed to the revolts in December 2010/January 2011.

What sparked those revolts? It started with a young man, Mohamed Bouazizi, setting himself on fire on December 17, 2010 to protest the corruption of the police in his small town. Outrage within the town was swift and people took to the streets in a rare display of civil unrest. These demonstrations were met with swift and violent suppression by government forces. Usually such displays would be censored from the media, however, in the world of mobile phones and social media these events were captured on video and broadcast around the world.

Depsite the goverment’s heavy media censorship they didn’t censor social media. They underestimated the power of tools such as Facebook, considering it a platform for socializing and dating – not political revolt. By creating groups criticizing the government and by posting their videos, activists were reaching out to the people of their country, overcoming geographical and political barriers. By January 6 the entire country was in revolt and by January 14 Ben Ali had fled the country.

Social media offered an opportunity for the people of Tunisia to share their dissonance in real time. They were ahead of their government every step of the way, planning strategies and circumventing censorship. By using such accessible and open tools for communication Tunisians not only galvanized their country but they inspired revolutions across their region. Those who scoff at social media, suggesting it is a pointless exercise in vanity, don’t understand its power. It give a voice to those who did not have one before, it provides a platform to broadcast ideas from people who have never been given one, and it has the power to quickly bring people together for a common cause.

As mentioned, one of the factors contributing to these revolts was the inequality within Tunisia. The poor distribution of wealth in a country (aka inequality) has been linked to many negative health outcomes. The connection between inequality and health is well developed and well researched. If you live in a  country with a high level of inequality you will live a shorter life, you will be more unhealthy, you will be exposed to more violence, and other such nasty things. You can watch a few videos with Richard Wilkinson if you want to know more. Thus, for the people of Tunisia the inequality and subsequent health/social impacts were finally too much to take and they revolted.

The thing is Tunisia isn’t the most unequal country in the world. The Gini Coefficient, the most commonly used measure of inequality, has been used to rank countries based on their income distribution. According to those rankings Tunisia  is 61st. The United States ranked much higher, sitting at spot 39.  That means that a country with LESS inequality than the USA experienced a massive social upheaval because of that inequality. That country used tools, like social media, that were underestimated and misunderstood by the ruling government to spread their message and effect change. They also used those tools to inspire others from around the world to support their revolution and start ones of their own. Interesting…

#OWS

~Amanda

For more information about the Tunisian Revolutions:

http://en.wikipedia.org/wiki/Tunisian_revolution

http://www.guardian.co.uk/world/tunisia

“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…

“Leaders must wake people out of inertia. They must get people excited about something they’ve never seen before, something that does not yet exist.”  ~Rosabeth Moss Kanter

The single most difficult thing about starting a blog (or anything for that matter) is inertia. Overcoming the resistance to change or doing something new requires an immense about of energy and bravery. The people I most respect are those who do not allow fear to prevent them from trying or creating something new.

As you may know, I am taking a course in Social Media and Health at the University of British Columbia and one course requirement is to start a blog. That said, my goal for this blog isn’t just to fulfill a course requirement, rather, I want to use it as a foundation to build upon and grow. Currently I am a week behind our required posting schedule. This is due to a few issues: 1) I became obsessive about the minute details of the blog (i.e., what it looks like, what the title should be) and 2) I have been interviewing for the last week and will be starting a new job in 1 month.

I understand that my obsessions with the details of the blog was a convenient way to avoid actually having to do the work, if I spent my time on that then I didn’t have any energy for the rest. I see this avoidance as a form of inertia – I very effectively convinced myself that I was moving along and making progress and adopting change when really I was spinning in the same spot.

The interviewing was time consuming but what prevented my posting was the anxiety and fear that the interviewing induced. I have been working in my current job for 3.5 years. I am exceptionally comfortable and safe in it, I could do it with my eyes closed and that is a huge problem. I knew that I had to look for new work in order to challenge myself and grow both personally and professionally, however, the idea of looking for a new job and actually getting one are two very different things. Here too I experienced immense inertia in the form of fear. When I found out on Thursday night that I got the job I wasn’t happy, I was afraid. My fear of change was paralyzing me but I also knew that the fear was good because it meant that I was challenging myself and moving forward. In the end it was that knowledge (and great emotional support from friends) that eventually pushed me to say yes.

So what the heck does this have to do with social media and health???

Generally, I think of health care as an innovative field. A lot of money is poured into research to develop new technologies, treatments, and methods to improve patient care.  However, when it comes to social media I feel that health care organizations can sometimes be laggards; they cannot seem to overcome inertia in order to adopt change.

I recently read a great article by KevinMD.com discussing the 7 media mistakes made in health care. It is the first 3 mistakes that I feel best relate to my current post.

• Avoidance: Health organizations have a lot on their hands and are working with ever-shrinking budgets. The idea of taking something new on is extremely daunting, thus it is easier to pretend that it doesn’t exist and you don’t have to deal with it. I think many organizations have told themselves that they have done well without it thus it cannot improve things.
• Fear: This is the consequence of being uninformed. I don’t want to believe that people are afraid of learning something new but it certainly seems that way. By continuing to bury your head in the sand you perpetuate the fear. Health organizations need upper level management to understand these technologies before they can support them but there appear to be very few at that level who do and who appreciate its potential.
• Sloth: As KevinMD mentions, social media takes work. In the case of health organization that requires a commitment of resources. With all of the cuts in spending it seems unlikely that funding could be allocated to something people don’t understand or see the potential of.

These factors, along with others, contribute to the organizational inertia behind adopting social media. Even if that inertia is overcome there is the very real risk that the organization is rushing into the idea without understanding its full implication. By rushing in, a new venture could be doomed to fail and feed into future resistance to change. Thus, organizations need open and educated individuals within them to help guide these activities to ensure success.

As (hopefully one day) a public health leader I take the words of Rosabeth Moss Kanter to heart. It is so critically important to be open to change and to champion change to those around you. It is innovative leaders that can help overcome much of the avoidance, fear and sloth associated with adopting new technologies.

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