Thursday, August 25, 2016

Research Dissemination using Social Media: Your chance to “Go viral”

Ruth Tadesse, RN, MS
PhD Student, College of Nursing
University of Utah

A quick review of the history of the Internet may be useful when discussing the ongoing shift in research dissemination. The Internet Society briefly summarizes the history of the Internet and reminds us what the Internet does by stating “The Internet is at once a world-wide broadcasting capability, a mechanism for information dissemination, and a medium for collaboration and interaction between individuals and their computers without regard for geographic location.”  It is this remarkable aptitude to connect people like any other medium that has made the Internet a unique platform to researchers who are not only are responsible for producing new knowledge but also for disseminating it.  As the graph below depicts, the Internet has come a long way since its inception in 1969.  Today, with available social tools, such as blogging and microblogging, the way scientists communicate about their research work is shifting undeniably from the traditional method of publishing in peer-reviewed journals. 

Image source: MALONEMEDIAGROUP

What is available on google?
A preliminary search on google using words “social media for health science researchers” resulted in close to 5-milion sites; another search using “twitter and blogs for health science research dissemination” retrieved 881,000 sites discussing topics ranging from public health to ePatient and eMedicine. Most of the information found on the Internet on research and social media is filled with information on “how to tips” signaling that the use of social media for research dissemination is new and an ongoing paradigm shift, and one that may not be fully utilized by current researchers.   
Social Media: A guide for researchers is published by scientists in the UK who have experience using social media, and introduces readers to ten other social media users.  Using the words of the authors, the guide was created “to show how social media can change the ways in which you undertake research, and open up new forms of communication and dissemination.” The content of the guide includes advantages and disadvantages of using social media for researchers.  Most importantly, the guide encourages readers to consider the following questions when using social media for research dissemination:
  • What is the appropriate tone for publication of scholarly ideas via social media?  Do I write as if I were producing a conventional academic article or do I need a different approach?
  • What should I publish and when?  Do I wait for things to be published in academic journals or can I start dissemination earlier?
  •  Are there intellectual property and copyright implications if I make ideas and results available using social media?
  •  Who is my audience?   
Social media impact and popularity: Intended or unintended consequence?
While researchers are advised to be thoughtful and consider the above questions, they are also encouraged not to be fearful of the impact of social media. Anne Weiler, co-founder and CEO of wellpepper, a website that declares to deliver “powerful analytics for healthcare organizations and awesome tools for end-users both patients and providers” wrote a blog about research dissemination with a little twist of “Publish or Perish” mantra.  She titled her blog post: “Post or Perish: Disseminating Scientific Research and the Kardashian Index.” She is one of the several bloggers who provides several useful tips about using social media for disseminating research. She cautions her readers to not dismiss the Kardashian Index stating “Popularity and valid information do not need to be mutually exclusive.”  


Image source: The HOST GROUP

Becoming viral: What does it mean for your research?
If you have posted your research on social media, whether it went viral or not, it is likely that your work has gone noticed and created a discussion.  In fact, this is one of the stark differences between the traditional method of research dissemination - publishing in peer-reviewed journals and disseminating research using social media. Nonetheless, anyone who is doubtful of this fact may want to read the paper written in 2011 by Dr. Gunther Eysenbach, a researcher who is known for his work on eHealth and consumer health informatics.  He wrote a paper in the Journal of Medical Internet Research on a study he conducted about twitter impact factor.  His paper titled “Can Tweets Predict Citations? Metrics of Social Impact Based on Twitter and Correlation with Traditional Metrics of Scientific Impact” explores the impact of twitter and compares it with the traditional method.  He reported highly tweeted articles are 11 times more likely to end up being highly cited. Dr. Eysenbach recognizes the relationship between social media buzz and articles cited is an association acknowledging a causation does not exist.  However, scientists will be wise to pay attention to this correlation and be informed about the impact of social media. 

In 2014, Gibbs et al., nurse leaders invited their core research team to pose for a photograph holding a sign explaining why they do research.  They posted the photograph on their department Twitter account using hashtag #WhyWeDoResearch and they write “what began as a simple way to introduce the research team to clinical colleagues, patients, and the local public gained momentum and attracted national and international attention…”  Their campaign has now reached 22 countries, has 8,600 participants, over 137 million impressions and over 93,000 tweets. Gibbs et al. (2015) paper published in Nursing Times titled “Clinical research benefits go viral via Twitter” is worth reading for those of us who are still contemplating of using social media or are not informed about the potential of this new paradigm. 

Blogging for reach and impact
For researchers who feel 140 words afforded by Twitter are a constraint for research dissemination, Research Blogging (RB) may be their answer.  The site was created in 2007 by the scientific blogger Dave Munger who was using an icon to distinguish posts about peer-reviewed research from other blogs.  Currently, Research Blogging site has over 1,230 active blogs, with over 26,960 entries posted about peer-reviewed research on different subjects in seven different languages including English, Spanish, and Chinese to name a few.  The site is known for being “a central means of disseminating findings of peer-reviewed research that bloggers have found interesting to read and analyze.” You can learn all about RB by reading an online article What is: ResearchBlogging.org posted on Scientific American by Bora Zivkovic.

Summary
On a final note, researchers are sensibly advised to choose their audience when disseminating research. One audience that they may not afford to discount are health policy makers who are in a position to translate evidence into practice. With regards to this, the findings of Kapp et al. (2015) paper may be informative for those who want to communicate with policy makers at the congress level in a timely manner.  In an era, when direct communication with congress and the public is possible using social media, researchers should take a note and capitalize on this ongoing paradigm shift of research dissemination.

Links to Hyperlinked Text:
Social media for health science researchers: https://www.google.com/#q=Social+media+for+health+science+researchers
Twitter and Blogs for health science research dissemination: https://www.google.com/#q=Twitter+and+Blogs+for+health+science+research+dissemination
Post or Perish? Disseminating Scientific Research and the Kardashian Index: http://www.wellpepper.com/post-or-perish-disseminating-scientific-research-and-the-kardashian-index
Kardashian Index:
Research Blogging: http://researchblogging.org/

Key References:
Eysenbach, G. (2011).  Can tweets predict citations?  Metrics of social impact based on Twitter and correlation with traditional metrics of scientific impact.  Journal of Medical Internet Research, 13(4):e123.

Gibbs, CL, Greaves, A., Keeling, M., Gaw, A., & O’Neill, F. (2015).  Clinical research benefits go viral via Twitter. Nursing Times, 111(19): 16-17.

Kapp, JM, Hensel, B., Schnoring, KT (2015).  Is Twitter a forum for disseminating research to health policy makers?  Annals of Epidemiology, 25(12), 883-887.

Zivkovic, B. (2011).  What is: ResearchBlogging.org retrieved from 
http://blogs.scientificamerican.com/network-central/what-is-researchblogging-org/

Personalized Healthcare, Personalized Medicine, Precision Medicine- what are they, do they mean the same thing, and why is it important?

Natalie Jackson
PhD Student, College of Nursing
University of Utah
Image:  www.123rf.com

I conducted an unscientific poll by simply asking people what these terms meant to them.  The most common answer (again, remember, unscientific poll) was, “healthcare that’s about you personally.”   When pressed for greater specificity as to whether the three terms all mean the same thing, the majority of people said "yes".  Very few people could provide a precise definition for any of the three terms, and most head never heard on any of the terms.  Does a precise definition exist, and does the average person need to know what these terms mean?  A google search for each of these terms was conducted. 

Personalized Healthcare:
Very conveniently, the Cleveland Clinic asked my very question, “What is Personalized Healthcare?  From patients to medications, one size does not fit all,” https://health.clevelandclinic.org/2012/05/what-is-personalized-healthcare/.  The article notes that many definitions exist, and that (as in my unscientific survey) people will use personalized healthcare and personalized medicine interchangeably.  They note that personalized medicine includes genetics and genomics; more broadly, personalized healthcare includes both of these items but adds in, “any other biologic information that helps predict risk for disease or how a patient will respond to treatments.”

Even though my poll was unscientific, I know we can’t choose only one website and think we have an answer.  Further down on the first page of my google search I find, “Program in Personalized Health Care - University of Utah Sciences” http://healthsciences.utah.edu/phc/.  Luckily, this website has a tab that asks the same question that the Cleveland Clinic does, “What is Personalized Healthcare?” The answer is, “Personalized Health Care is the tailoring of health care to the individual characteristics of the patient. These characteristics can include environment, social history, health history, family history, genetics, proteomics, and more.”  Note the word “can”.  This definition seems to imply that genetics and genomics don’t necessarily need to be part of personalized healthcare. 
Already, we can see that different definitions of personalized healthcare exist.

Personalized Medicine:
We already know from the Cleveland Clinic’s website that they believe personalized medicine includes genetics and genomics.  Again, let’s see if there are other definitions.

A google search of the term “personalized medicine” leads to the following governmental website: http://www.fda.gov/downloads/ScienceResearch/SpecialTopics/PersonalizedMedicine/UCM372421.pdf. This pdf titled, “Paving the Way for Personalized Medicine, FDAs Role in a New Era of Medical Product Development” includes the following definition of personalized medicine from the Commissioner of the FDA, Margaret A. Hamburg, “the tailoring of medical treatment to the individual characteristics, needs and preferences of each patient..."  The article emphasizes that this paradigm introduces emerging science and technology that will focus on therapeutics targeted to the individual while also considering the interplay of genes, anatomical and physiological differences, environment, social, and cultural and how all of these elements might affect how each individual responds to disease. The FDA description appears to include the whole person and even elements outside of the individual that might affect a person’s response to disease. However, the shift toward personalized medicine is not without potential downsides.  An article from CNBC,  http://www.cnbc.com/2015/12/04/personalized-medicine-better-results-but-at-what-cost.html, discusses the expense associated with this paradigm, and notes that it will take time to determine if the expense pays off.

Precision Medicine:
Again, as with the previous two terms, I conducted a google search of “precision medicine”.  The National Institutes of Health notes that, "Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person,” https://www.nih.gov/precision-medicine-initiative-cohort-program.  President Obama has launched a Precision Medicine Initiative with $215 million in funding for 2016 that includes formation of over a million participants to be part of a precision medicine research cohort.  See the infographic below for more details.


Again, as with personalized medicine, questions exist as to whether the money is worth investing in precision medicine. The website for the journal “Scientific American” has a June 1, 2016 article titled, “The Paradox of Precision Medicine” http://www.scientificamerican.com/article/the-paradox-of-precision-medicine by Jeneen Interlandi.  The article notes that debate continues over whether precision medicine will indeed transform healthcare, and, as with the article from CNBC, cost is a concern.

What did my unscientific search for the definitions of the three terms reveal?
Hard and true definitions for any of these three terms seem to be elusive.  What can be said is that these terms all appear to reference a changing paradigm in health care that focuses more on individual characteristics than the previous one “one size fits all” paradigm.  These characteristics might include genetics, environment, family history, social history, culture… all factors that influence your individual health.  A predominant concern regarding this paradigm appears to be cost.

FINALLY….IS THIS TYPE OF HEALTHCARE OR MEDICINE IMPORTANT TO ME AND WHY IS THIS NEW?
This paradigm shift assumes that accounting for factors such as genetics, environment, and lifestyle, to name a few, will provide improved health outcomes for individuals.  The previous paradigm and its assumption of “one size fits all” has not shown great results, despite spending nearly 18% of GDP on healthcare health metrics do not show stunning success.  According to a Commonwealth Fund article, The United States spends more money on healthcare than 12 other countries, but shows worse outcomes in life expectancy and for a number of chronic conditions, http://www.commonwealthfund.org/publications/issue-briefs/2015/oct/us-health-care-from-a-global-perspective

In monetary terms alone, these terms and this type of healthcare and medicine should be important to everyone because 18% of GDP represents a large amount of money being spent on current healthcare strategies that produces dubious healthcare.  Regardless of what it is called, the move to personalized healthcare, personalized medicine, or precision medicine will affect people on the individual and societal level.

Healthcare costs, resources, access, priorities of care, and ethics are beautifully covered in the following article. 

Just Caring:  Assessing the ethical and economic costs of personalized medicine, Leonard M. Fleck, Ph.D, UrologicOncology: Seminars and Original Investigations 32(2014)202–206  Center for Ethics and Humanities in the Life Sciences, College of Human Medicine, Michigan State University, East Lansing, MI,

Key Points from the article:
What is a just and caring society when our resources are limited and our healthcare needs are unlimited?  What are people willing to pay?
Constantly new and improving medical technology and interventions create new health care needs and increases costs
Need to prioritize- we cannot meet all the needs of every person
Social justice- how do we decide?  What are the norms to make these decisions?

An example from the article, and something to think about:
       Personalized cancer research
       Targeted cancer therapy costs: $70,000- $130,000/treatment
       Most only increase life expectancy by weeks or months
       Is this cost-effective?
       Is this a fair allocation of limited social resources
       QALYS- quality-adjusted life years
       Nearly 600,000 people in US die each year from cancer- if each person used only one of these drugs, it would add $60 billion to our health care bill
       Should this money be used on other healthcare needs that will yield higher quality life years at lower cost?
       As a society we need to find a way to decide what we will spend our limited resources on
Additional Links:
The following links provide information on the University of Utah’s involvement in the paradigm shift toward personalized healthcare, personalized medicine, and precision medicine:

Just Caring:  Assessing the ethical and economic costs of personalized medicine, Leonard M. Fleck, Ph.D, UrologicOncology: Seminars and Original Investigations 32(2014)202–206  Center for Ethics and Humanities in the Life Sciences, College of Human Medicine, Michigan State University, East Lansing, MI.