Using Infodemiology

In the 2010 Medicine 2.0 Congress in Maastricht, the attendees were given a presentation by Dr. Gunther Eysenbach on Infodemiology and Infoveillance. In his article published in the Journal of Medical Internet Research 2009, Eysenbach defines Infodemiology as the “science of distribution and determinants of information in an electronic medium, specifically the Internet, or in a population, with the ultimate aim to inform public health and public policy”. Eysenbach goes on to explain by giving examples for Infodemiology applications which include: “the analysis of queries from Internet search engines to predict disease outbreaks (eg. influenza); monitoring peoples’ status updates on microblogs such as Twitter for syndromic surveillance; detecting and quantifying disparities in health information availability; identifying and monitoring of public health relevant publications on the Internet (eg. anti-vaccination sites, but also news articles or expert-curated outbreak reports); automated tools to measure information diffusion and knowledge translation, and tracking the effectiveness of health marketing campaigns. Moreover, analyzing how people search and navigate the Internet for health-related information, as well as how they communicate and share this information, can provide valuable insights into health-related behavior of populations”.

Developing tools for Infoveillance

Here are a couple of examples of innovation and community empowerment working together:

In December 2011, a suicide prevention app called “Guard Your Buddy” was launched to provide ‘soldiers with an immediate support network in times of need through a variety of strategies’. The article was written by Jenny Wilson for Smart Planet (@jennydwilson). It allows members of the Tennessee National Guard to connect with others in their community, and also offers professional psychological counseling 24 hours a day. Through the use of good policy writing, beginning January 1, all members of the Tennessee National Guard will be required to carry a card with the web site and app information whenever they are on duty. Another example is an app available in the iTunes store called ‘ASK and Prevent Suicide‘ by Mental Health of America of Texas.

In order for alert systems for health service providers to be developed to pick up ‘calls for help’ on a large scale, their understanding and acceptance of Infodemiology needs to be established first. But how far are we from utilizing these tools, when there are still public health practitioners and service providers who categorize social media as a tool for broadcasting what one just had for breakfast?

Reference

Eysenbach G. Infodemiology and Infoveillance: Framework for an Emerging Set of Public Health Informatics Methods to Analyze Search, Communication and Publication Behavior on the Internet . J Med Internet Research 2009 11(1):e11

Image by GDS Infographics via Flickr

At Youth Health 2.0, I am passionate about how tools and messages are designed to inspire young people towards better health outcomes. This blog post is about us leaving something behind when we die so that someone else, whom we do not know will have a better outcome.

The FilmLife Project is dedicated to increasing awareness around organ donation in conjunction with Donate Life Week 2012 (19-26 Feb). On the 21, 22 and 28 of January a free FilmLife workshop worth $3000 will be held. Sign up, get trained  and enjoy the journey. For more information please see here.

If you’re blogger  and would like to take up the FilmLife Blogger Challenge head to this website here.

As for me, I am going to answer these 2 question:

 1. What’s your take on or experience with organ donation, and why did you choose to take part in the FilmLife Blogger Challenge?

I have no ‘attachment’ to my organs and am looking forward to the day when I can make a difference in someone’s life. Of course one will never know when their time is up but, to make such a precious gift to a stranger is a privilege.

2. If you were to donate your organs, which one would you love to donate, and why?

I would donate everything. Why? Where I’m going I wont be needing them. It is as if a newborn baby is hanging on for dear life to their umbilical cord and placenta when it is time to use their other faculties and organs.

3. Who in your family would you need to talk to about organ donation, to be sure your loved ones knew your wishes?

My wife and our children will be together on this one and see it come through.

Image via Wikipedia

The first impression

On the 18th of November 2010, I first posted a brief overview of what I knew about Diva Chat then. I discussed the pros and cons of this tool, with many health professionals and a few top researchers in the country on HIV/AIDS and sexual health. None of them had heard of Diva Chat and didn’t seem that interested. I was troubled by their lack of curiosity when questions like mine were being ignored because they were technology and social media related.

Then in July 2011, through a guest blog by Rachel De Sain (@rdesain), the Director of Flaxworks, we raised the subject of Diva Chat again, hoping to create a greater awareness amongst policy makers and researchers, based on her observations around youth online communications in Cape York. She said,

‘Diva Chat was widely known and used by many of the youth community. There were mixed reactions by older community members as to the effectiveness of this as a communication tool for youth, particularly police and some health workers who stated that they hated the service, they felt that it led to a lot of bullying and had acted as an ignition to an already fragile community where multiple families/clans have been displaced, have little to do and as such fights erupt easily.‘

My other source of information on Diva Chat is a contact who lives in a remote community and prefers to remain anonymous. The information provided through our discourse is credible and unbiased.

ABC News and The Herald Sun

Now, Diva Chat has been picked up by traditional media. The ABC Radio in Darwin, presented Diva Chat in context based on interviews with myself and a few other key informants. I stressed that whilst Telstra is providing a service that is being utilized by Indigenous youth in remote communities, it cannot monitor the way the service is being used adequately because it was not designed to operate like Facebook. The bullying that happens online is a clear amplification of attitudes and behavior that is born and fueled in real life.

This is our opportunity to increase our efforts in understanding Indigenous youth and their relationship to online communications and build/provide a service that is adequate whilst promoting a safe environment. Facebook has evolved to provide such a service through its ‘report abuse’ and ‘block’ features. Maybe Indigenous youth should be encouraged to switch to Facebook? Should Telstra provide services that promote a safe environment? To what extent should the responsibility lie with a telecommunications provider?

The following week after the ABC article on Diva Chat was aired nationwide, The Herald Sun published an article entitled ‘Indigenous leaders want to ban or censor social media including Facebook’. This information brought much concern to me as this proved that there is very little awareness around what social media is built for and how it can be harnessed for social good.

In my TEDxDarwin talk last year in August, I said ‘…social media functions like a typical Indigenous community’. I said this because Indigenous communities, whether in Australia or beyond our region, are known for their collective values of sharing and collaboration, which is the essence of social media. Because there is such poor levels of engagement and education on social media and technology for Indigenous communities in remote Australia, social media is being used in a damaging way and the positive potential is not being maximised. I wish the NT Mojo (NT Mobile Journalist) project has just as much traditional media hype as the Diva Chat story. This project is the embryonic reflection of Indigenous control over their online space in the future, but we should try to make it happen today. There is no time to lose.

2. Is technology to blame in cybersafety?

3. Stanford Medicine 2.0 Conference 2011 – The Report Card (Guest blog by Prajesh C)

4. iPhone Apps for STI/HIV Prevention

5. Mark Scott (ABC) on social media leadership

6. Social media and Indigenous culture

7. Youth Health 2011 Sydney conference presentation

8. Sexual health iPhone Apps

9. Wanted: a Social Media Expert?! (Guest Blog by Kate Nelson)

10. A simple QR code evaluation

“Australia’s love affair with social networking continues to strengthen with one in four of our customers regularly using their mobiles to access Facebook,” Rebekah said. “Gen Y is leading the charge and armed with their mobile phones using new technologies and applications to make their mark on the world.”

Although it has been almost a year since Telstra posted this on their website, I doubt the scenario has changed dramatically. What this means to researchers especially in health, is that they now have a tool that they can use to engage their target group or wider community in order to convey their findings in a more accessible manner. Heidi Allen a blogger with over 15 years experience in the publishing and health industry has published an informative article entitled “Sharing research via social media by pain focused and general medicine journals“. From a study that she shared at the Australian Pain Society Conference, Heidi concluded that the “top general medical journals already use social media to disseminate their content”.

Despite the lack of conclusive evidence of  the effectiveness of sharing clinical practice or other research findings via social media, there is no doubt that researchers have always been faced with the task of disseminating information in a simple, cost-effective and engaging way. The only way to find out is to venture, explore and find your own experiences in using social media.

The landscape and communities in the Northern Territory (N.T.) differ greatly from the rest of Australia. Here are 5 reasons why social media can be considered as a tool for engagement and information sharing by researchers and their institutions in the N.T.:

1. In remote communities literacy and language barriers can be overcome through the use of video blogs. The use of visual based information that is accessible via tablet, mobile phones and computers can make the process of conveying information less daunting, taking into consideration cultural  and gender sensitivities. There are already communities with 3G mobile connection and with the National Broadband Network roll out, the excuse of internet unavailability or mobile connection are no longer applicable.

2. According to local market research (Creative Territory) and an article from the Rite Series, the number of “Facebook users identifying as Territorians is approximately 69, 000 of which 50,000 reside in Darwin”. This rough estimate still proves a large enough community that can be engaged for researchers working with urban and rural communities especially youth and young adults.

3. By using social media, researchers can get a sense of what the research needs of the community are. Through well designed marketing and engagement strategies researchers can bring together a larger sample of opinions and ideas. This is called ‘crowdsourcing‘. Here is a video called ‘What is Crowdsourcing?’

4. Publishing research findings in peer-reviewed journals can also be complimented through the use of blogs and video blogs. Tailoring information in an easy to understand jargon free concept e.g. Mayo Clinic Center for Social Media can make it easier for the community to understand and refer to the information, ask questions and share that as peer-to-peer recommendation. Check out this example called “Healthy holiday eating – remakes of favorite recipes” from the Mayo Clinic website.

5. Due to the lack of time and opportunity, researchers can find it difficult to connect and network with their colleagues from different research areas even though working under the same roof. Another typical example is where researchers from the same institution but from different projects end up doing their work on one community causing research fatigue in the community. Instead through a professional  social networking tool like Yammer, researchers can keep in touch on what their overall organization is working on and reduce duplication, exchange experience and share knowledge and information.

For my oral presentation at the 8th  Australian and New Zealand Adolescent Health Conference (3rd IAAH Asia Pacific Congress) I prepared and demonstrated the use of a QR code in health communications and youth engagement. Present in the audience were health professionals who were interested in and experimenting with social media. The session chair was Fiona Robards, the manager of the NSW Centre for Advancement of Adolescent Health.

The QR code was to show its interplay between information and behavior.  With the help of the Fogg Behavior Model and how hot triggers can affect a behavior, I wanted the audience to get a feel of how we can now bridge the gap between stimulus and response. Not just any response, but an action that can get a client closer (through small baby steps) to (i) engage with the particular health service or (ii) at least have a better chance of looking at the health service  website and take down its contact details with very little effort.

The QR code would take the audience (once scanned via smartphone) to a more in-depth blog article on the topic of my presentation at the Conference. In short, I gave the audience who kindly attended my talk two presentations for the price of one!

I used Paperlinks to generate my QR code and to manage my mobile web page. I also made use of their free analytic tool which provide basic data. I started giving out the QR code (a total of 100) which was printed and laminated from the 7th of November until the 28th of November 2011.

What  the data say

100 laminated QR codes were given out between the 7th of November – 28th of November 2011

Target group: Health professionals, academics, medical students, youth workers, clinicians.

Total visit: 78

Total unique visit: 70

Total visitors who clicked the Introduction page: 38

Total visitors who clicked on my link to the blog article: 23

Scans were made from iPhone (47), iPad (2) and Android (4 visits) devices.

Geographical data:

When location services on the mobile devices were enabled it showed me where scans were being made. Some as far as New Zealand and the United States.

What do you think so far?

Health professionals are a hard group to crack and I don’t a younger target group would have been easier. I noticed The Greens had a poster up regarding cheaper clean energy and a QR code in the bottom of the poster taking you to their URL. It made me think why I wasn’t compelled to scan it. Why do you think, scanning the code was not automatic for me, although I’m currently researching it?

Related articles

• QR Codes Gone Wild (greatfinds.icrossing.com)
• Retailers linking services through QR Codes but where are health services? (youthhealth20.com)
• Yay Or Nay Of QR Code Marketing (gabrielcatalano.com)
• Does anyone use QR Codes? The jury is still out (liesdamnedliesstatistics.com)

Alex (Twitter: @alex_d13) already in his blog post dated 25 July 2011 says that QR codes will take off in Australia and that it possibly already has. As someone who ” has a background in marketing but nowadays looks more towards how marketing can integrate traditional thinking into new media” this young person has given us another impetus for healthcare to adopt these new means of engagement.

Alex and I both found in our mailbox the following items not necessarily in similar order to each other;

1. Woolworths promoting more recipes online
2. Mitre 10 promoting DIY videos online
3. Bunnings, similarly with DIY videos, but also with store locator
4. Bras ‘n Things with a store locator QR code

In Alex’s post, he poses a vital question to the corporate world; “have we surpassed QR codes”? My answer to this question is simple, unfortunately it is another question; “have you heard of NFC?” Near Field Communication is a much simpler way to connect information in real life to your mobile device, helping you store, access, map and expand on information without even turning on your scanner. Take a look at ‘Poken‘ for a good example of NFC. So we are at the brink of surpassing QR codes, but those who got in early and trialled it will be able to turnover better quality results when NFC is available in all smartphones.

More smartphones will be manufactured with built-in NFC, and the talk of the town so far is about using your phone to pay and conduct other transactions and leaving your wallet at home. What does this mean for healthcare? Just off my head, there are ideas in mobile health that work by triggering motivated individuals to take better care of their chronic conditions by touching their smartphone against a menu or product in the supermarket. They then receive nutritional information and ideas for food preparation. Remember the Fogg Behavior Model? We have to make a behavior easy to do. By providing information at the touch of a smartphone for someone trying to lose weight and keep fit, we are make ‘shaping’ a new behavior, easy to do.

Implications for the healthcare  industry

I think the longer we hesitate to adopt, experiment and find out what works for the public and our clients, the harder it is going to get for health communications to pin down what works and what doesn’t in an effort to practice evidence based health communications.

I see no harm in reinventing the wheel because what I gathered from Lee’s talk is that, the intent to innovate, to improve the status quo and the expected outcome is not a linear process. Embarking on a mission to reinvent the wheel will not result in another similar wheel being created but will open up a whole new arena of possibilities. If innovation was a linear process, then the future can be predicted through a mere mathematical formula. The word innovation will also cease to exist as a result.

We can no longer demand, based on our rights for any resource from anyone either because we can now create our own bank of knowledge through collaboration and social media makes this possible. The young people at the Youth Health 2011 Conference in Sydney were talking about their ‘right to good and accurate
information’ to be made available but in reality, social media gives us the ability to investigate, connect, collaborate and bring out the truth for our peers without the need to demand from anyone. It makes us interdependent instead of dependent. It is no longer about rights and demands but about seeking the truth through collaboration and being open to critique and possibilities.

I hope that we can draw together people like Lee both from within our country and beyond to consult not merely about the technicalities of social media and its risk management strategies but of its intrinsic ability to generate solutions through sharing ideas and making knowledge available to everyone regardless of their background. I would like to see Dr. BJ Fogg from the Stanford University Persuasive Technology Lab address the 8th HARC Forum.

An auditorium of interested people from various backgrounds within healthcare and beyond  attended the 7th HARC Forum “Bringing the Social Media Revolution to Healthcare”. Lee Aase may seem like an ordinary person (he has never refered to himself as an expert) but his contribution to health communication innovation is priceless. That is the beauty of social media – anyone can make significant contribution on a global scale.

The photo that you see here is taken during the panel session with Lee Aase on the left, Melissa Sweet (award-winning public health journalist) in the centre and Hugh Stephens (a social media expert and medical student).

I had a unique opportunity to interview Lee over the phone from Darwin and I brought to his attention questions that are of importance to the sustainability of our efforts (#hcsmanz).  His thoughts on the acquisition of new skills in social media by health professionals, its complimentary ability to strengthen the use of peer-reviewed journals to spread knowledge and improve patient outcomes regardless of economic disadvantage in low resource countries are documented in the paragraphs below.

“Social Media University Global (SMUG) started as my personal blog. I would always say “go to my blog” whenever I was asked about social media. Eventually I created a step by step practical or hands on learning space for anyone to learn how to use social media,” subsequently naming himself Chancellor. “It’s not only about or for  healthcare, but we have built on it through the Mayo Clinic Centre for Social Media. There are now 1300 people from 6 continents who join the SMUG Facebook Page“, he says.

“People in low resource and developing countries can also benefit from a blog like this. Having a blog like this creates tools for people with interesting ideas to find others with interesting ideas.”

“Public Health bloggers have an opportunity to find creative ways to raise awareness of issues that have public health impact or huge societal impact. A video that we made called ‘Know your numbers‘ was used to illustrate the importance of knowing your heart related numbers (blood pressure, lipids and BMI) in a fun way. So it is not preachy or talking down to people. Maybe a kind of clever way of getting the word out. We are using basic tools like YouTube and Facebook and blogs to help communicate a message that could make alot of difference for lots of people in helping them prevent a heart attack.”

“Blogs can play a huge role in disseminating information in two senses:

Firstly, in spreading the word about the things that are available in peer-reviewed journals because there is so much showing up in the journals but are locked away. If it isn’t mobile or getting to the frontline practitioners, it’s not doing the practical good that it could. So there is a huge opportunity for these tools.

We do YouTube videos on articles that are published in peer-reviewed journals, where the doctor involved is talking about what was behind the study, what does this really all mean to patients. Then getting the patients who were really active and engaged around a disease to help spread the word too. You don’t have to subscribe to the journal to have access to this information.

The journals are going to be under increasing pressure to move faster in publication. I think that is a great benefit and that there are alternate ways.  There are  other ways of disseminating research information, a good example would be our “spontaneous coronary artery dissection”  that was published on the Mayo Clinic Proceedings. An example of how patients are turning upside down the process in that they are helping to initiate ideas for how research can be done. We are using social media to recruit for more people to be part of a study, especially in rare a disease. A virtual registry can help out and social media is making this possible.”

I hope in the next HARC Forum we can move on from introductions and debates around the use of social media in healthcare into the science and art of online communications. I would like to have indepth discussions on the behavioral change potential social media has as spoken off by Dr. BJ Fogg.

Introduction

Rietmeijer and MacFarlane in their journal publications drew attention to online social networking sites and mobile technology as important areas for sexual health awareness and prevention campaigns. With this in mind, the Studio 34 Project was set up between July  and December 2010 in order to anlayse and map the social media communications strategy that would be required to engage with young people in Darwin.

Two blog posts (July 2010 and September 2010) were written describing the journey, observations that were made and the challenges we faced in the process of engagement during the pilot. Today I would like to focus on the insights we gained regarding the skills and resources that are required by health professionals to create engaging content for online sexual health promotion. In this project we used a Facebook Page and loaded videos either directly onto Facebook or a posted link from YouTube; and the learning is as follows.

Creating content – This is where it all begins

Online sexual health promotion targeting young people requires content that is original, preferably made by youth for youth, locally produced and in a variety of media format. Consistent posting on Facebook is essential. The health professional working on using Facebook must decide the frequency of posting and strive to maintain a steady flow of information either weekly or fortnightly to start off with.

Any camera can be used to take photos that are relevant to sexual health. The purpose of using still shots is to be able to give young people a clear picture of:

• What is a  sexual health service?
• What are swabs and jars for a urine specimen?
• What does the clinic space look like and,
• Where is the clinic located.

Video content is the next step up from taking still shots. This is where young people can watch videos of young people, thereby de-stigmatizing the issue and promoting ‘safe sex’ among peers. Videos can be shot or recorded with a camera, camcorder, Flipcam or your very own smartphone. It is always important to plan your video content a few weeks in advance and write out your storyline. After shooting material for your video, do not post them immediately. You can use simple video editing tools like Windows Movie Maker or the Apple iMovie to make a good product. Be sure to add titles, credits and a credible author before uploading.

Facebook  information section

In your information section of your Facebook page is it important to clearly state, what or who your organization is. Credibility cannot be an overemphasis. Give a short description of your aims and objectives and provide contact details. More information can be provided under the ‘Discussion’ tab. Designing a “Welcome” tab is optional and in the case of Studio 34, we chose to have a “Comment Policy” tab which was initially implemented by the American Center for Disease Control Facebook Page.

Facebook metrics – are we doing it right?

The analysis

The screen shots above and below of the Studio 34 Facebook page provides basic analytics to tell you whether the content that you are producing to create engagement is effective or not. This is available under the “Insights” tab. This is the data that I used to know what kinds of media content creates or spurs the engagement from the people who “liked” the page.

Daily story feedback: Tell me how many new subscribers we have everyday and who have unsubscribed. It also tells me how many people are commenting. “Comments” is the secret sauce of Facebook. According to BJ Fogg, if you can create content that spurs commenting, then you have definitely achieved an engaged audience.

Page Posts: For each time I post, whether it be a status update or an article, a variable called ‘Impressions’ tells me how many times a post was viewed on a user’s wall, shared by a user, maintains an active presence on user’s wall. For more information please read this article.

Activity: By correlating and comparing posts by date to the number of page views and unique page views, you derive information on what type of media is easily consumed. Remember you’re shaping or sequencing a behavior so the output has to be simple to perform. From the graphs above, photos are the most popular content accessed by the users.

Demographics: We aimed for the 16 – 20 years age group but we got mostly the 25-34 age group. Through Facebook advertising you can target the precise age group but in this pilot we wanted to see the flow of word of mouth marketing on Facebook.

Interactions: From the graph below, I would say that it is better to make quality posts every week as there are more weekly to monthly active users and that they all reacted as soon as a new post was live. In our case we posted  in the beginning of every week. It is possible that if had a post every day we would have more daily active users but that would require more content production which can also be  sustainable .

C onclusion

With the development of the Facebook Social Graph, there is plenty of opportunity to market sexual health services through peer influence by including the Facebook comments tab  or a ‘Like’ button to your sexual health on your website. The main purpose of using social media in sexual health promotion is to sequence or shape a desired behavior and not just promote knowledge and improve attitude (“Dont eat the apple Eve”). Some of the behaviors that can be shaped is:

• Contacting a sexual health service via mobile device either with an SMS or email for appointment easy to do.
• Contacting a sexual health service via mobile device either with an SMS or email for personalised  answers to questions etc.