Category Archives: Stuff

From VCR to PVR: A retrospective on interface design and affordance

Posted by on December 28, 2011 No comments

Recently I found some written instructions I had prepared several years ago to help my parents program their VCR. It took me three pages to write out the steps to record a program.  Where applicable each step included a hand drawn representation of the button the VCR (and/or the remote) to ensure clarity and understanding.

The first page explained how to bring up the menu to record a program in the future. The second provided further details and discussed potential troubleshooting strategies. The third included the final steps and introduced the steps for recording a program currently being viewed.  Even with these detailed instructions mistakes were made and recordings were missed. We will never know if the error was occurred in the programming stage or if show never actually aired.

I believe I also wrote out similar instructions for my grandmother. As she was even less inclined to adapt she opted to use her own technique. My grandmother would start recording a program hours in advance of its airing before leaving her home by putting the television on the desired channel and pressing the record button on the VCR. It may have required hours of rewinding but it worked for her. Since this time technology has evolved and we now “one touch” programming through the use of on-screen guides that list program dates and times. However, I’m pretty sure if my grandmother were alive today she would use her old system – start recording on the PVR when she went out rather than using the on-screen guide.

In 1988 Donald Norman wrote about this issue in “The Psychology of Everyday Design“. He made reference to digital watches and microwave ovens as well as VCRs as examples of devices that were difficult to operate. Yet they were supposed to be for an average person to use on a daily basis. Why were they so difficult to use? One theory suggests that the skill set required to design such devices doesn’t necessarily translate in a way that is evident to someone who does not have a similar background or training. What is apparent to one is not necessarily so to others. A lack of applying design principles (human-computer interaction) or examining how the device works in real use (e.g. usability testing) were provided as possible reasons. One resolution was to utilize technical writers, those skilled in interpreting complex electronic interfaces using plain language written material  Some things are made to be obvious or intuitive – you use the sharp edge of the knife to cut. Others have developed over time with common usage – it is universally understood that turning the knob is a necessary step in opening a door.

Human behaviour is like running water. It always finds the path of least resistance. But can we ‘afford’ this type of affordance in health care?

 

Content analysis of #hcsmca tweets: the importance of context in social media analytics

Posted by on December 4, 2011 No comments

In a previous post I presented an analysis of the tweets from the Health Care Social Media Canada (#hcsmca) Twitter community.  By using a network analysis tool (NodeXL) I was able to determine that two Twitter identities (@infoway and @jasonboies) were participating but perhaps not in a connected way. When community members are “off to the side” it may be an indication of lurking behaviour (reading messages but not posting). However, since tweets were present from these Twitter accounts this label may not be applicable. A similar concept, labeled “legitimate peripheral participation” (described more thoroughly here) in which novices engage in a community of learners in limited fashion may be a more accurate descriptor of the phenomenon captured in the data set. In order to understand the findings from this network analysis a more thoroughly examination of the tweets containing referenced to the two outliers was required. To facilitate this process I used a tool called ITCA (Internet Community Text Analyzer) developed by Dr.Anatoliy Gruzd at Dalhousie University.

Using the Excel spreadsheet created by NodeXL from the network analysis I exported it into .cvs format, which was then imported into the ITCA tool. The dates of the tweets included Thursday November 24th, Friday November 25th and Saturday November 26th. There were 953 unique messages and 243 posters in this sample. The top ten posters (Image 1) is essentially in alignment with the network analysis, which was ordered by eigenvector centrality. In other words importance is, in part, reflected by the number of tweets.

top ten posters

 

 

 

 

 

 

 

 

 

 

 

 

Image 1: Top Ten Posters in #hcsmca Twitter community

The ‘local concepts’ (characters, words, terms and concepts) were extracted by looking for patterns frequently used in the data set. The ITCA tool revealed that there were 9812 unique terms. Image 2 shows the thirty most frequent terms and the number of times the term appear in the data set. The tag cloud formation shown in Image 2 also provides a visual representation of frequency (the larger the word the more times it appears). An individual term can be removed by clicking on the red X or explored further by clicking on its hypertext link, which reveals all instances by which has been tweeted.

top thirty terms extractor

 

 

 

 

Image 2: Top 30 Results of Local Concept Extractor (click to enlarge)

Using this tool I was able to search for the tweets associated with @Infoway. The results indicated that the two tweets were related to an upcoming HL7 (health level seven, a concept related to standardization in health information technology) certification. A hand search of the .cvs file indicated that one tweet on Friday November 25th, 2011 was directly from @infoway. The other was a re-tweet of this tweet by @alexanderberler on the same day. The second tweet was also recorded because @mentions were included in the data set obtained using NodeXL. Image 3 shows the @alexanderberler RT.

contents of infoway tweet

 

 

 

 

Image 3: @alexanderberler Re-tweet of @infoway tweet (click to enlarge)

A search of jasonboies revealed twelve tweets. Image 4 shows the total number of times in which tweets contained this Twitter identity in this data set.

search of jasonboies

 

 

 

 

 

 

 

 

Image 4: Incidents of jasonboies

Tweets with jasonboies appear to have taken place from Friday November 25th (four in early evening UTC) to Saturday November 26th (eight in late evening UTC). This time frame is outside the weekly hcsmca tweet chat, which took place in the evening on Thursday November 24th (the weekly tweet chat is held every Wednesday at 1:00 pm EST except for the last week of the month in which it is held on Thursday evenings).

Based on this preliminary analysis it would appear as though connecting with other members of the hcsmca community is a phenomenon beyond just using the hashtag in your tweet. These findings may indicate that being engaged means participating with others in the real time chat.

Perhaps more importantly this analysis demonstrates the need to examine not only the pattern of tweets as yielded using network analysis tools but also to examine the content. In addition, these findings should be interpreted with the aid of survey data and interview findings obtained directly from members of hcsmca community. For example, a survey could determine which participants are tweeting as part of their work, which may affect which time of the day they use Twitter. Interviews would provide even richer detail allowing us to understand what exactly prompts someone to both tweet and re-tweet material in the hcsmca community.

Recommended reading

Daniel, B. K. (2010). Handbook of research on methods and techniques for studying virtual communities: paradigms and phenomena. Hershey, PA: Information Science Reference.

Feldman, R., & Sanger, J. (2007). The text mining handbook: advanced approaches in analyzing unstructured data. Cambridge ; New York: Cambridge University Press.

Network analysis of the #hcsmca Twitter community: lurking as a form of legitimate peripheral participation?

Posted by on November 27, 2011 No comments

In the ethnography, “Situated Learning” (Lave & Wenger, 1991) it was observed that learning a trade or profession such as a tailor or midwifery was best supported by engaging in this activity within the actual community in which it was taking place. In this context the learner, as an apprentice, can be exposed to others with varied skill levels within that particular job or trade from which they can learn. Initially they may engage in some limited tasks such as maintaining inventories of equipment or tools and ordering supplies. Over time and with more exposure to the task their role will evolve and increase in responsibility. For this to take place they must learn from others with more experience. Some members of this particular community may have expert status whereas others may be at more of an intermediary level. At the beginning those new to the community participate only on a peripheral level. As novices they have yet to learn the terms, concepts and practices that would allow them to engage in the profession in a meaningful way. For example, someone new to programming may subscribe to a mailing list or follow a newsgroup that discusses the computer language they want to learn. These groups are often composed of individuals with varying levels (novices, intermediaries, experts) of skill level forming what has been termed “communities of practice”. This legitimate peripheral participation or “lurking” is an acceptable and supported behaviour amongst many well established online communities. After reading the messages for a period of time novices may feel more comfortable and post questions of their own. This may lead to some form of debate amongst other participants in which new knowledge is co-created. Novices may contribute in other ways by sharing information related to issues they have already encountered. For example, the novice programmer may have been advised before participating in the message forum that using an integrated development environment (IDE) will aid their learning of how to program. Over time the community shares their experiences and members of all levels engage and learn from and with each other. This phenomena has been documented amongst mailing lists and newsgroups.

But what about the newer forms of social media such as Twitter?

Founded by social media expert and plain language writer Colleen Young (@colleen_young) the Health Care Social Media in Canada (hcsmca) Twitter-based community was designed as a means by which Canadians with an interest in social media within a health care context could exchange information. By posting tweets using the acronym, “hcsmca” those wanting to share and learn more about this topic area can follow the posts. Each week the community meets for a live tweet-up in which messages are exchanged in real time providing for a more conversational tone to the exchange. I have participated in this community almost since its inception. Over this time I have wondered about the types of connections that were being formed, what information is being shared and learned and how effective Twitter is as forms of information dissemination in this context.

To explore this further I examined the network relationships in the hcsmca community with NodeXL (http://nodexl.codeplex.com/). Using the import tool I limited the results to 100 people for this initial exploration. I requested edges (or connections) for each of these Twitter scenarios: “follows” relationship (an individual and their followers), “replies-to relationship in tweet” (a reply to an individual tweet), “mentions relationship in tweet” (a tweet that mentions a user) and a “tweet that is not a reply-to or mention” (a posted message or tweet). NodeXL calculates a variety of statistics related to network analysis. By using filters you can refine the resulting graph in form that provides meaning.

Image I provides one static representation of a many possible layouts of the results. The NodeXL tool allows for more dynamic views (e.g. colour coded relationships between users such as “follows”, “replies-to relationship in tweet” and depictions of the other metrics mentioned above). It also provides for the ability to re-position the location of each user. Image I (below) demonstrates one instance of these options.

Network relationships of hcsmca Twitter communityImage I: Network analysis of #hcsmca community – November 26th, 2011

To better view the relationships I limited the out degree (people with the most connections) to seven. I then arranged the display from left to right by eigenvector centrality (a measure of importance in the network). Community leader Colleen Young, who often moderates the weekly tweet chats is positioned at the far left as she has the highest eigenvector centrality in this group. @DoctorFullerton is next, @nursefriendly and @ehealthmusings follow and so on. What may be of most interest are the two outliers positioned on the far right: @infoway and @jasonboies. They were represented in the graph because they had an out degree value greater than seven. However, I am curious as to why they had no connections to the remaining members in this particular snapshot of the #hcsmca community tweets. Does this indicate some form of lurking? How can this behaviour be explained?

In order to understand this further a content analysis of the tweets will be conducted. In the next installment I will explore the contents of these tweets using Netlytic (http://netlytic.org/), an Internet Community Text Analyzer.

Reference

Lave, J., & Wenger, E. (1991). Situated learning: legitimate peripheral participation. Cambridge [England] ; New York: Cambridge University Press.

Recommended Reading

Hansen, D. L., Schneiderman, B., & Smith, M. A. (2010).  Analyzing social media networks with NodeXL: insights from a connected world. Burlington, MA: Morgan Kaufmann.

Valente, T. W. (2010).  Social networks and health: models, methods, and applications. Oxford ; New York: Oxford University Press.

Thanks to @marc_smith for his assistance.

Physician schedule thyself

Posted by on November 10, 2011 No comments

Accidents happen. Often when we are tired, overwhelmed with too much information and too much to do we make mistakes. Many of us work long hours, interacting with complex machinery and in noisy environments. Few of us, however, are required to work 36 or more hours in a row, with little or no sleep. Physicians do this on a regular basis and patient safety is at risk as a result.

Why does this happen? Many years ago I asked a senior staff physician who worked in a large metropolitan hospital this question. He told me there were three reasons: (1). A physician needs to learn how to make decisions no matter how they feel physically (2). We are short-staffed and (3). It was done to us before therefore it will also be done to those who come after us.  I’ve since heard another reason: the more hours you work the more opportunity you have to learn new things. I don’t know how effective this latter strategy is for physicians-in-training. Or whether it is used as a fear tactic. For example, someone might be told: “if you don’t treat enough cases of X you will not have enough knowledge to pass the board exam in your specialty”.

This clip (1:23 minutes) from the television show “ER” in which Dr. Elizabeth Corday explains at a weekly M&M (Morbidity and Mortality) meeting reasons why and ways in which the system could be changed.

Her concluding marks are quite poignant.  I don’t think the situation is much different now then it was when this show aired in 1998. Or when I asked a physician ten years previous to that. But I do think her point is valid. Who would want to fly in a plane in which an air traffic controller co-coordinating its take-off and landing had worked 36 hours in a row without sleep?

But I think the real question is whether you would want to fly in plane with a pilot who had worked 36 hours without sleep. However that would never happen. Pilots (and the airline industry) know that if they had people flying jets for many hours in a row they would likely make a mistake. The plane could crash and many lives would be lost. Including the pilot. Not quite the same scenario for a physician. Maybe the rules regarding work hours would change if their lives and not just those of the patient were also in danger. For this to be achieved we need more collaboration between everyone involved in providing care.

Journals: you can’t publish without us so please work with us

Posted by on September 30, 2011 No comments

A couple of great posts from other bloggers on the peer review process, journal publishing and the open access movement:

I’m excited that others are sharing their thoughts on this issue. I’ve written about this before (see “Access to peer reviewed journals“ ). Petermr’s piece specifically advocates for patients (among other groups) to have access to this information and uses the Human Rights code as a foundation to make the argument. Brilliant work!

It should be noted that JMIR has adopted two unique methods for open access publishing. The fast track fee provides the option of paying a fee for a three week turnaround. I believe the money is used to compensate the reviewers for their time. There is also an Open Peer Review Articles process, which allows JMIR users to review articles who have yet to undergo peer review. Abstracts for these articles are posted at the site so please take a look if you are interested in engaging in this process.

Update: Monday October 3rd, 2011

I recently found out about a repository, arXiv that has been used for pre-publication papers in the sciences since 1991. It was started in physics and later expanded to include other fields such as computer science, mathematics and astronomy. Although the papers posted are not peer reviewed moderators do review the submissions to ensure they are relevant topic-wise. We should consider this unique model to disseminate information when considering changes to the current system.

Deb Matthews, Minister of Health and Long–Term Care Webchat Transcript: Ontario Liberal Party plan for health care

Posted by on September 24, 2011 1 comment

Deb Matthews, Minister of Health and Long–Term Care Webchat Transcript: Ontario Liberal Party plan for health care

Tuesday September 20, 2011 8:00 pm

Note: This transcript is also available on Facebook. Each comment or question is followed by a time stamp indicating when it was posted. Inclusion of this transcript is for informational purposes only. No endorsement intended.

Ontario Liberal Party: Hello everyone and thank you for joining us tonight on Facebook. Tonight we’re joined by Deb Matthews, Minister of Health and Long–Term Care, to talk about the Ontario Liberal plan to keep building the healthiest province to grow up in and grow old in. 8:01

Deb Matthews: Welcome to tonight’s webchat! So glad you could all join us. Please start submitting your questions – we’ll try to get to as many as possible tonight but it probably won’t be possible to get them all. Looking forward to the conversation! 8:02

Comment From Guest:  Good evening Ms. Matthews, thank you for providing a forum to ask questions and open discussions for all Ontarians. 8:02

Comment From Philip: Can you confirm that, if re-elected, the Liberals will continue to support the First Link program and roll it out across the province? 8:03

Deb Matthews: Thanks for the First Link question. I can tell you that we enthusiastically support First Link! It’s making a real difference for people with Alzheimer’s and their families — and will continue to do so! 8:04

Comment From Jacquie Micallef:   Good Evening – The 8-week unpaid caregiver leave is a step in the right direction, however we (Alzheimer  Societies in Ontario) hear from caregivers that flexible respite is critical to their health and wellbeing. If re-elected, how will Liberals give caregivers the break from caregiving that they need? 8:05

Deb Matthews: The 8-week job guarantee for caregivers is an important part of our strategy to keep people home, where they want to be, as long as possible. i’m glad you support it, and i look forward to working with you to find other ways to support caregivers.8:06

Deb Matthews: As you know, tomorrow is World Alzheimer’s Day. I want to take this opportunity to say “thank you” to everyone committed to improving the lives of people with Alzheimer’s Disease. 8:07

Comment From Natrice Rese: Thank you for this chance to ask questions, can you elaborate more on the coming PSW Registry and how it will protect our elderly and vulnerable please, as their protection is paramount. 8:07

Comment From OntarioPSWAssoc: We would like to know what you plan on doing about the PSW issue in this province? 8:07

Comment From OntarioPSWAssoc: Minister Matthews; Societies most vulnerable are dependent upon PSWs everyday. How do you plan to standardize the PSW profession? 8:08

Deb Matthews: I’m very excited about the PSW registry, and I know PSWs are too! I’m also excited that we’re committed to 3 Million more hours of PSW homecare – three times the number of hours the NDP is committed to! 8:10

Comment From Paula Schuck: How will the McGuinty government meet the needs of the coming demographic shift. The sheer number of seniors that will be diagnosed with dementia and alzheimers as well as other health issues in the coming decades is staggering. What are we doing to meet this co 8:10

Comment From Paula Schuck: Families like ours have been sitting on a waitlist for special services at home for three years. What will be dine to clear up the wait-list?. No respite money right now for far too many struggling families. 8:11

Deb Matthews: Thanks for joining us, Paula! Embracing the demographic shift is exactly what we’re doing. There are many parts to our strategy, outlined to some degree in our Party platform, but the foundation is building community supports to allow people to stay home as long as possible, instead of moving to LTC before they need to. 8:13

Comment From Jacquie Micallef: Thank you so much for the recognition of World Alzheimer Day. This chat is very timely! 8:13

Deb Matthews: Another piece is that we’ll refocus a portion of our province’s research investments to support the prevention, treatment and possible cure of conditions such as Alzheimer’s and related dementias. 8:14

Comment From Patricia: I keep hearing about what the Conservatives will cut — and I am growing tired of this talk. Instead, I want to hear what you and the Liberals will build. 8:15

Deb Matthews: Our plan is to strengthen local decision making through the LHINs. We have seen great examples of how communities are working together to get better results for patients and better value for health care dollars. 8:16

Deb Matthews: No matter how good the bureaucrats in Toronto are, they’ll just never be able to pull communities together the way local decision-makers are. People in Thunder Bay will make better decisions about health care in  Thunder Bay than people in Toronto can! 8:17

Comment From Guest: What is the Liberal plan for Local Health Integration Networks, as compared to the Conservative plan to eliminate them, to reduce administrative health care costs and increase funds for direct care? 8:17

Comment From Patricia: LHINs? I’m not familiar with that. 8:18

Ontario Liberal Party:  “Local Health Integration Networks”: http://www.health.gov.on.ca/transformation/lhin/lhin_mn.html 8:19

Deb Matthews: Patricia, I urge you to take a look at our platform. We set out a challenge to make Ontario the healthiest  place in North America to grow up and grow old. Part of that is a goal to reduce child obesity by 20% in 5 years, and to develop an Active Aging Strategy. It’s time to focus on wellness!! 8:20

Ontario Liberal Party: The Ontario Liberal plan: http://www.ontarioliberal.ca/OurPlan/Platform.aspx 8:20

Comment From Ritika Goel: Hello Ms. Matthews. I’m representing an organization of young health providers concerned with the state of publicly-funded healthcare in Canada called Students for Medicare. We are interested in hearing how the Liberal party would put a stop to and prevent the further emergence of for-profit facilities in Ontario. 8:21

Comment From StudentsforMedicare: Hello Ms. Mathews, Our organization is interested in knowing how the Liberal party will do to prevent and curb the proliferation of private, for-profit clinics in Ontario to uphold the Canada Health Act. 8:21

Comment From Dan Raza: A few months ago, the government passed a law prohibiting extra, out-of-pocket billing as a measure to prevent creeping privatization. On behalf of physicians that want to continue to practice in a pro-medicare system, thank you! What plans to do you have to enforce it? 8:23

Deb Matthews: Protecting universal health care in Ontario is a sacred trust, as far as I’m concerned. We’ve passed The Commitment to the Future of Medicare Act, and we’re enforcing it. Last year, we collected over $600,000 for patients who had paid illegal fees. Sad to say, both the NDP and PCs voted against the CFMA 8:24

Deb Matthews: Thanks Dan, Ritika and The Students for Medicare, for standing up for universal health care! 8:25

Ontario Liberal Party:  Thank you everyone for your questions. We are trying to get to as many of them as possible before 9:00. 8:27

Comment From Guest: Tim Hudak has promised to shut down eHealth Ontario. What are your plans for eHealth Ontario? 8:28

Deb Matthews: Anyone who works in health care knows that we need to continue to transform it unless we want to move to two-tier health care, which Ontario Libs certainly don’t!! A vital part of that transformation is moving forward with eHealth. We’ve now got about half of Ontarians with EHRs – shutting down eHealth would be just dumb! 8:29

Ontario Liberal Party: “EHRs”: electronic health records 8:31

Comment From Laura O’Grady: Then why do we rely on population-based research for decision making? (i.e. one study in Windsor, for example, informs the policy around screening for the whole province because it is considered “evidence-based”) 8:32

Deb Matthews:  Sustainability of universal health care requires reliance on evidence. The Excellent Care for All Act reinforces that principle. Of course, there will always be debates about how strong that evidence is, so we need to keep investing in better research. 8:33

Deb Matthews: I urge you all to participate in the Ontario Health Study! It will give us extraordinary data!!8:33

Ontario Liberal Party: https://ontariohealthstudy.ca 8:34

Comment From Don Seymour:  Deb, can you talk about how your will improve services for persons with mental illness? 8:35

Deb Matthews:  Thanks for joining us, Don! Our Mental Health and Addictions Strategy is already being implemented. It’s a 10 year strategy, starts with kids, and backed up by a $257M commitment in our last budget. 8:36

Deb Matthews: I was very disappointed that neither the PCs nor the NDP even mention mental health in their platforms. For us, it’s a high priority. 8:37

Comment From Natrice Rese: Can you tell us more about in home dr. visits? Many elderly and infirm, special needs in our population do not get seen by professionals when they have crisis 8:39

Deb Matthews: Bringing back House Calls is part of our strategy to help people stay home longer. It’s proving to be very popular with seniors and the families that support them. It’s more than just doctors, it will include nurses, OTs and other health care professionals. Also telemedicine and on-line support! 8:41

Deb Matthews: The Libs are the only party that is facing the demographic challenge seriously. Our health care system wasn’t designed for the demographic reality of tomorrow — we need to fix that! 8:43

Comment From Nicole: What about support for Community Health Centres? They service vulnerable and marginalized populations and provide great interdisciplinary service for the community….and are often undersupported in funding. 8:44

Deb Matthews: We are thrilled to have supported the greatest expansion of CHCs ever! We’re in the middle of doubling sites from 53 to 101. Delighted with the announcement of new CHCs just a few weeks ago! Also,  increased funding for CHCs by 108% — that’s $152M! 8:45

Comment From Nicole: That’s fantastic news! 8:48

Comment From J: Will you support OHIP to fund IVF procedures?8:49

Comment From Josee L: 1 in six couples suffer with infertility. My husband and I being included in that statistic. If elected, will you support IVF funding for Ontario families struggling with infertility?8:50

Comment From J: We also suffer from infertility. 8:50

Deb Matthews:  I know how important it is that we support Ontarians as they build their families. That’s why we established the Expert Panel on Adoption and Infertility. We’re moving on their recommendation re: educating both public and providers. And we’re watching the Quebec experience very carefully and doing the research in Ontario to be better able to make the decision here. At this time, we’re not moving with OHIP funding of IVF, but we’re not closing the door, either. 8:53

Comment From Zach: What role does preventative care play in the Liberal health care plan? 8:55

Deb Matthews:  Now that we’ve come such a long way in rebuilding our health care system – cut wait times in half, got 94%  of Ontarians with primary care, and rebuilding infrastructure – it’s possible to focus on prevention. We know that 1/4 of our health care spending is spent on preventable illness. So making Ontario the healthiest place in North America is our next goal!!8:59

Comment From Laura O’Grady: The system was designed for acute care. Now we have chronic complex disease. This should be part of  focus for change. 9:00

Deb Matthews:  You are so right! People with chronic, complex needs deserve special care.That’s why we’ll provide a Health Care Coordinator to facilitate care between specialists and family doctors, hospitals, and the community to assist seniors who’ve been hospitalized within the previous 12 months. 9:02

Deb Matthews: Thank you so much for all your questions and comments! I wish we had more time to get through everything. Please make health care an issue in this election and ask your local candidates to support  better health care for all! Hope you’ll all vote Liberal so we can do this again!! 9:03

Ontario Liberal Party: Thank you for joining us Deb.

If you don’t yet, make sure you follow her on twitter: @Deb_Matthews

We hope we’ll see you on Facebook again for our next webchat. Stay tuned for details in the next coming days.

Technology, the knowledge economy and how academia should respond

Posted by on September 17, 2011 No comments

Computer with networked attachmentsWe need not look far for examples of the massive change the Internet has brought upon us. Take the music industry for example. Like water finding the path of least resistance people started to find ways to create and exchange copies of songs for free. There has been much speculation as to why this occurred. Some say it is because no one wanted to buy a whole album when they only wanted one song. It became simple to share music, one song at a time, online. Peer to peer file sharing ensured no one would be required to store songs on their server and risk getting caught providing copyright material for free.

Why wouldn’t the record companies sell new material online? Did they just not “get it”? Some bands began to sell their songs online or provide them for free. Others found innovate, “pay what you think it is worth” business models. Music fans will always buy music. Just make it available in a convenient and fairly priced format. Same goes for the film industry. People didn’t even wait for the film to be released in a digitized format before they were recording it in the theatre and distributing these versions online (in some ways this is similar to bootleg concert recordings). Now this industry is suffering. But it has learned from the mistakes of others and now offers other channels of delivery. Soon films released in the theatre will also be available for viewing online at the same time.

Another medium experiencing great threat from the Internet is journalism. They also ignored the signs. People wanted their news in an online format. They wanted to be able to provide comments instantly by posted their opinion at the web page below the story. Who would write a letter to the editor using paper, an envelope and stamp when you can instantly post online? Print subscriptions to newspapers have plummeted. Some say this is because the news is outdated once it arrives. Others prefer to save on costs and view it for free online. Other threats also arose. Bloggers, some of whom write about events experienced in person and others who share their own opinions have become a serious threat to credentialed journalists from well respected newspapers and magazines. Suddenly the monopoly these industries had on what, when, how and by whom news was reported became threatened.

Then HIN1 happened and some very smart journalists at The Guardian UK learned it was much better to create the story then just sit back and report it. They found data about the reported incident rates at the Center for Disease (CDC) web site. They took that information and put it into a Google Docs spreadsheet. Using the Google Maps API they did a bit of programming to connect the location from the outbreak data to the map. This created an interactive rendering of where the current outbreaks of the pandemic were in real time. This incredibly useful and informative tool goes beyond writing a story that H1N1 is spreading. It provided us with up to date information professionals and laypersons could use in an easy to access format with complete transparency of how the information was developed. This field is now called data journalism.

In the future all workers will need to adapt and change their job on the fly in this fashion. It is no longer about learning how to do a task or set of tasks – it is about learning to identify what the task is then adapt, acquire or even create the skills to complete task. This is the knowledge economy.

Teacher with brief case and light bulb for head

 Many of those already in the work force won’t have the skills to work in this type of environment. They want to stick with what they know, what they were taught and have been doing for years. They don’t want to learn anything new. In part the academic system in which they were schooled is to blame. The emphasis on memorization and testing of rote knowledge is out of date. What can we do now to change this for the next generation?

The first think we need to acknowledge is that it is no longer about memorizing. Information is freely available online. What is the point having the student memorize the periodic table when they can just look it up online? I know what you’re thinking, “I had to long how to add, subtract, multiple and divide and there’s no way my kid is going to get away with using a calculator”. Yes, it is important to understand the theoretical underpinnings of a concept. But we need to shift our emphasis. We need to focus more on creating academic environments that foster ways to combine collective knowledge into new forms of intelligence. And we need to do this at a younger age. It is about the co-creation of new knowledge not the memorization of old. And the sooner we make these adjustments the better off we will be. In a global economy our future depends on it.

Data Part 2 – When you can’t collect it, find it elsewhere. And get the patients involved.

Posted by on September 8, 2011 No comments

Statistics StairwellAnother way to obtain data for use in research studies is to find sources in which it has already been collected. There are many organizations that record data either for their own purposes or as their mandate. Obtaining data in the former circumstance may be difficult due to privacy issues. However, Statistics Canada as an example of the latter provides many data sets for free. Compilations that require specific variables can also be obtained but there is often a fee associated with this type of request. The advantage of using pre-existing data include not eliminating the need to obtain approval to collect the data but also obtain permission from a research ethics board, both of which can add a year or more to the process.

The two main health-related data sets provided by Statistics Canada are the Canadian Health Measures Survey (CHMS) and the Canadian Community Health Survey – Annual Component (CCHS).  Both collect information on a number of clinical indicators such as chronic conditions, medication use, medical history, nutrition, chemistry panel, disease screening as well as social support and some socio-demographic information.

Unfortunately this kind of data is not of much use to me. Questions about patient engagement, empowerment, use of social media and other technologies in diagnosis and self management are more of interest to my research. Some of this information I can get by collaborating with organizations that provide web-based forums or resources for patients. I can also scrape it directly from online sources (e.g. mining the Twitter feed). However, there are also obstacles in this process. Partnering with an organization may involve an ethical review and involve other institutional barriers. Data scraping involves hiring someone with technical and programming skills or doing this on my own.

Statistics FishbowlI think the larger issue here is how this data will be used. My intentions are to demonstrate how patients (and providers) can collaboration using technology to improve health. However, I am concerned that some technology-based patient initiatives that rely on funding will be at risk if they are unable to “prove their worth”. Some progress has been made in developing metrics for social media. But is it specific enough to health care? Patient-driven efforts like those who informally share information on message forums, through social networking and using Twitter will likely continue to thrive as they are not dependent on these funding sources. Some promising work on how patient collected data can be used is being conducted by the organization Patients Like Me. However, what is still lacking is patients’ ability to collectively use data on their health to influence change in procedures, prioritization and policy in health care. Of particular concern to me is what is being collected in electronic health records. Will patients have control over this information? Will they be able to export it for their own use? Will they be able to combine it with other patients in order to conduct in-depth analysis? In Canada we are paying for this system. Mining data is one way to have a say in its development, design and delivery. It is therefore imperative that patients maintain control over their data or it may not be used to best serve their interests. I look forward to the day when my job involves teaching courses how to mine patient-generated data to aid decision making and the class is filled with empowered, engaged people who want to be part of this change.

What is the definition of social media within a healthcare context?

Posted by on August 1, 2011 4 comments

Healthcare social media (hcsm) can be defined as the interactive engagement through use of electronic platform(s) for the multi-directional exchange of user-generated information, knowledge, data and wisdom including anecdotal experiences amongst patients, their families, healthcare professionals, health researchers and healthcare administrators.

1 answer on Quora

What is the definition of social media within a healthcare context?

Data: harder to find and share than one might think

Posted by on July 22, 2011 No comments

Stack of books

An important component of my work involves publishing papers in academic journals. There are a variety of different formats but most are either original research or theoretical pieces. Original research papers result from conducting a study or experiment. This format may be easier to publish, at least in biomedical journals as many accept submissions in this format only. In addition, with the aid of powerful statistical analyses original research may be viewed as more solid form of “proof” that new knowledge has been generated and therefore be considered to be of more merit. Qualitative research yields what is commonly referred to as ‘findings’, which can also lead to new information or knowledge. Journals are ranked based on their “impact factor”, which is calculated based on the number of times a paper is cited and other variables. It is more desirable to have your paper published in a high ranking journal as it an indication of your value as a researcher.

There are various steps associated with conducting original research. The first is generally to conduct a literature review. This is done in order to ensure that your research idea has not been previously published. Over the past ten years the literature review has evolved from simply searching a variety of relevant indexed databases to the much more rigorous “systematic review”. The way in which you conduct your literature search can impact the ability for your research to be published in the higher ranked journals. The more rigorous standards you apply in your literature search increases the chances you did not overlook publications that may presents similar results as your study. There are specialists trained to conduct literature reviews. If possible you should consult such an expert during this stage of the research.

Once you have determined that your research question is viable you may need to obtain funding in order to conduct the study. This will allow you to hire research assistants, biostaticians and others to help execute the study. To obtain funding you will need to complete a grant application, which may require anywhere from ten to twenty pages of written information. Within these documents you make the case for your study, articulate why it is worthy of funding and back this up with citations from the research you obtained in the literature review. You must then wait until a funding organization announces a call for applications that fits with your research idea, apply for funding and wait again to find out whether your project has been selected.

If you are lucky (success rates vary from ten to thirty percent) enough to be granted funding you must then apply for permission to conduct the study from an ethical review board (also known as a Research Ethics Board or REB). These boards consist of volunteers who may have specialized knowledge in research, ethics or specific topic areas (e.g. expertise in clinical trials, research with specialized populations, etc.). Universities and hospitals generally have one or more REB in order to review research conducted by or within these institutions. This application process can also take many months and may involve a series of revisions.

When approved you must now find participants for the study, which can also take months, especially if you are looking for a niche population (e.g. diabetics who use social media). When the data has been collected it must coded, analyzed and the results written up. This process can also take weeks or months, depending on how much time you have available and the schedule of others assisting in this process. In some situations you may chose to present preliminary findings at a conference in order to gain feedback on your study.

After the paper has been written you must submit it for publication. This process involves a peer review in which others with expertise in this particular area read over your work to ensure it is worthy of publication. This is also conducted by volunteers and the process can take months or longer. Your article may be accepted but require several amendments. You may need to consult your colleagues who were involved in the study in order to complete these revisions. This process may go on for two or three rounds of edits before your paper is ready to be published. All of this may take months. In addition there is often a backlog of other papers that are waiting to be published so it may take a year or more before your paper actually appears in print.

To illustrate a real world example I share the following steps and time line for a research study I recently collaborated on with other researchers:

  • 2007 – Spring: I conceptualized a study involving tagging, tag clouds and how using these tools to search for health care information impact the perception and judgment of its credibility
  • 2007 – Summer: I found a funding source and assembled a team of researchers to prepare the grant application, which was due in September 2007
  • 2008 – Spring: We were notified that our application was successful in April 2008
  • 2008 – Winter: Due to scheduling conflicts we were unable to move forward with the project until the late in 2008. A programmer was hired to create the application used in the study
  • 2009 – Summer: A research assistant was hired and started in August of 2009
  • 2009 – Fall: The application for approval from the ethics board was submitted
  • 2009 – Fall: Approval from the REB was granted in early December of 2009. The study was submitted for conference presentation
  • 2010 – Winter: Data collection commenced in January 2010. The study was accepted for presentation at a conference in February 2010
  • 2010 – Spring: The study findings were written up and submitted for publication consideration in a special issue of a medical informatics journal on March 30th, 2010
  • 2010 – Fall: In September 2010 we were informed that the paper was rejected for the special issue as it was outside the scope of the topic area. It was re-submitted three weeks later to this same journal for publication consideration in a regular issue
  • 2011 – Summer: As of today, Friday July 22nd , 2011 the publication is still under review

Almost four years has passed since this study was started and we still have no idea of when the results will be published.

Update: This paper was accepted for publication in the International Journal of Medical Informatics on Monday October 3rd, 2011.