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Cancer patients on Twitter: a novel patient community on social media

Cancer patients on Twitter: a novel patient community on social media | Health and Technology | Scoop.it
AbstractBackground

Patients increasingly turn to the Internet for information on medical conditions, including clinical news and treatment options. In recent years, an online patient community has arisen alongside the rapidly expanding world of social media, or “Web 2.0.” Twitter provides real-time dissemination of news, information, personal accounts and other details via a highly interactive form of social media, and has become an important online tool for patients. This medium is now considered to play an important role in the modern social community of online, “wired” cancer patients.

Results

Fifty-one highly influential “power accounts” belonging to cancer patients were extracted from a dataset of 731 Twitter accounts with cancer terminology in their profiles. In accordance with previously established methodology, “power accounts” were defined as those Twitter accounts with 500 or more followers. We extracted data on the cancer patient (female) with the most followers to study the specific relationships that existed between the user and her followers, and found that the majority of the examined tweets focused on greetings, treatment discussions, and other instances of psychological support. These findings went against our hypothesis that cancer patients’ tweets would be centered on the dissemination of medical information and similar “newsy” details.

Conclusions

At present, there exists a rapidly evolving network of cancer patients engaged in information exchange via Twitter. This network is valuable in the sharing of psychological support among the cancer community.

Keywords: Breast cancer, Breast neoplasms, Internet, Leukemia, Social media, Twitter messaging, Web 2.0Go to:Background

Health-focused websites have become an increasingly valuable information source for cancer patients in recent years, with such patients seeking details about treatment options for their specific condition as well as about general cancer information [1-3]. These websites provide a means of communication for patients and their families that is more convenient and less expensive than that provided by traditional face-to-face patient-serving health organizations [2]. In a previous study, we suggested that patient-authored web logs (or “blogs”) represent a unique form of information delivery as they provide useful personal insights about cancer treatment that are unlike the information often conveyed by healthcare providers through face-to-face interactions and standard media [1]. Such patient-centric sites are also becoming a valuable source of personalized health information for the increasingly “wired” cancer-patient communities across the globe.

Attendant to the continuing rise in social media (“Web 2.0”) participation and the resulting proliferation of user-generated online content, the public can thus potentially play a larger role in all stages of knowledge translation, including information generation, filtering and amplification. As with the Internet itself, social media outlets run the gamut of just about every imaginable scope and size, with Twitter, a free social-networking and micro-blogging service launched in 2006, taking the lead as a method of disseminating exceptionally brief online messages to a potentially global audience; Twitter enables its millions of users to send and read each other’s “tweets,” or short messages limited to 140 characters, with the users themselves determining whether their tweets can be read by the general public or restricted to preselected “followers.” Followers of a specific Twitter user can view or respond to tweets online or via smart phones and other handheld devices, allowing for a nearly instantaneous dialogue between the user and his or her followers. The service has more than 190 million registered users worldwide and processes about 55 million tweets per day [4]. The Twitter service started in Japan in 2008; at present, there are more than 10.2 million active Twitter accounts registered in the country [5].

A recent health-focused analysis of the American “Twitter stream” revealed that a substantial proportion of tweets contain general chatter, user-to-user conversations that are only of interest to the parties involved, links to interesting pieces of news or self-promotion or unwanted “junk” messages (i.e., spam) [4]. Yet despite its high level of noise, the Twitter stream does contain useful information. Many recent news events or scientific issues have been documented and discussed via Twitter directly from users at the site in real time [6].

As tweets are often sent on location via smart phones and other handheld platforms,they convey more immediacy with interactivity than other websites or blogs [4]. In addition, healthcare providers and medical researchers are increasingly using Twitter for a variety of purposes related to patient care and treatment, including sharing clinical news with patients and discussing case studies with fellow physicians [7-11]. A recent JAMA letter showed that physicians frequently use Twitter to share medical information, with nearly half of the studied tweets being devoted to the discussion of health topics; the authors found that physicians’ rapid and timely dissemination of such information via Twitter could potentially positively influence public health in a variety of ways [12].

Recent research has also shown that Twitter may also be a useful medium for patients, who use Twitter to exchange medical information and discuss various aspects of their individual illness; although detailed information about patients’ use of Twitter for such purposes has yet to be fully studied, it has been shown that some patients with breast cancer, chronic kidney disease, diabetes and inflammatory bowel disease have used Twitter for the purpose of sharing information about these conditions [13-18].

Twitter is an interactive, real-time medium that can be used at a relatively low cost in terms of users’ initial and ongoing monetary investment and in the time, effort and expertise required for use. Furthermore, as has been described above, Twitter has been effectively used in recent years for the dissemination of medical news and advice, as well as the delivery of “personal stories” related to a number of health topics. As a result, Twitter can be considered to have the potential to play an important role in modern social communities, including online communities consisting of “wired” cancer patients. However, the research conducted to date regarding the role of social media in influencing cancer patients remains very limited. In this study, we examine recent Twitter usage in Japan and evaluate its role in the lives of today’s “wired” cancer patients.

Go to:MethodsSearch of cancer Patients’ Twitter accounts

A search was conducted of every publicly available user profile on Twitter in Japan. We began this search by reviewing all user accounts in which the names of cancers were described in the user’s Twitter profile. The cancer names used in our search were obtained in accordance with the Foundation for Promotion of Cancer Research’s 2010 report on Japanese cancer rates [19]. The terms searched were: breast cancer, leukemia, colon cancer, rectal cancer, colorectal cancer, cancers of the uterus, malignant lymphoma, brain tumor, stomach cancer, lung cancer, thyroid cancer, ovary cancer, kidney cancer, prostate cancer, esophagus cancer, bladder cancer, liver cancer, oral cancer, pharyngeal cancer, gallbladder cancer, cholangiocarcinoma, laryngeal cancer, skin cancer and multiple myeloma. These names were searched using both the Japanese Katakana writing system and Chinese characters.

The website used for the profile search was the “16 (one-six) Profile Search β Version for Twitter” [20], which enabled us to search, in addition to users’ Twitter profiles, the number of follows, followers, tweets, lists, registered dates and last-posted dates. The search was conducted over a total of 5 days in the spring and summer of 2011: March 27, 28 and 29; April 3; and July 12. Following the methodology used by Chretien et al. (2011) [12], we then extracted from our dataset of cancer profiles only those user accounts that had 500 or more followers; we considered these to be “power accounts,” as they had each developed a relatively robust Twitter following.

Our search of Japanese Twitter profiles that included the cancer terminology noted above yielded a total of 731 user accounts, of which 466 profiles belonged to cancer patients and were included in our initial review. The remaining 265 cancer profiles were excluded from our initial analysis because they belonged to persons and organizations who were not patients themselves (Figure (Figure11).

Figure 1Extraction of cancer patient accounts.

Among the initial 731 user accounts that included cancer terminology, breast cancer was listed in user profiles most frequently (n=147), followed by leukemia (n=59), colon/rectal/colorectal cancer (n=40) and uterine cancer (n=39). Those patients who listed multiple cancers in their Twitter profiles were counted separately (Figure (Figure22).

Figure 2Number of accounts by type of cancer. Number of accounts of self-identified cancer patients, with cancer names described in their profiles. In the case of multiple cancers, each cancer was counted.

Fifty-two Twitter accounts with the relevant cancer descriptions in their profiles met the criterion established by Chretien et al. (2011) [12] required for being “power accounts and were considered by us to be influential accounts because of their wide reach. (The account with the most followers belonged to a comedian with breast cancer; because of the user’s celebrity status, the difficulty of adequately tracking tweets between the user and her followers and the fact that the vast majority of the user’s tweets focused on comedy and not on cancer or other medical topics, we excluded this account from our analysis.) A detailed analysis of the remaining 51 accounts was subsequently conducted following their extraction from the dataset.

Review of the relationships between users

Using the mentionmapp website [21], which enabled us to search for relationships between users on Twitter, we examined the presence and extent of specific relationships between Twitter users. This site graphically displays the number of tweets created most recently by a specific user prior to a search, as well as the relationship that exists between that user and other users (i.e., referring to sending a reply in the form of “@user name” on Twitter one or more times). This secondary search was conducted on December 4, 2011. As the technical capabilities of this Twitter-centric search engine have yet to be clarified by the site’s operators, the period available to send replies that can be detected by a mentionmapp search is unknown.

Review of user-generated Twitter content

We extracted from our dataset the user account with the greatest number of followers from the accounts of breast cancer patients, who made up the largest population of Twitter users studied here. We subsequently used mentionmapp to extract the Twitter users who had a direct relationship with that primary user. In this way, we were able to extract the user accounts in which a direct relationship was found with the user who had the largest number of followers, as observed by one or more replies being sent. The number of tweets of such accounts per day was analyzed using Whotwi, a tool that displays the number of tweets per day or time zone, as based on an analysis of the most recent 600 tweets of individual accounts [22]. Among these accounts, the account that had the largest number of tweets per day was extracted for further analysis.

The contents of the tweets among the users who tweeted a reply one or more times to the extracted user are described using Bettween, a tool that enables retroactive searching of tweets among users [23]. Furthermore, tweets among cancer patients were also searched in the same manner using the Bettween Search instrument.

The Whotwi and Bettween searches began on December 11, 2011. The Whotwi search was completed this same day, and the Bettween search was carried out over a period of 7 days.

This study was approved by the Ethics Committee at Yamagata University Faculty of Medicine.

Go to:ResultsCharacteristics of user accounts

Characteristics of the extracted 51 “power accounts” that had 500 or more followers are shown in Table Table1.1. As previously noted, the term “breast cancer” appeared more frequently than other cancer term in these users’ profiles (n=13). The ratio of males to females in the “power accounts” was 1:1. The Kanto region, which includes the Japanese capital of Tokyo and several other major metropolitan areas, was listed as the home location for almost half of the studied user accounts (n=23). Of the 51 “power accounts,” over half (n=27) of users disclosed their real names, while almost half (n=21) displayed a personal photograph in their profile. The number of tweets per day for the top 5 types of cancer of user accounts is shown in Figure Figure3.3. The median of the average number of tweets per day for breast cancer, leukemia, colon cancer, cancers of the uterus and malignant lymphoma was 2.12, 3.79, 3.21, 3.79 and 2.00, respectively, with corresponding ranges of 0.03–14.6, 0.03–16.2, 0.14–13.1, 0.57–22.3 and 0.13–10.7.

Table 1Characteristics of the accounts (followers > 500)Figure 3Average number of tweets and number of users per day for Twitter users’ 5 most prevalent types of cancer.User connectedness

As previously noted, we opted to exclude from our analysis the account of the Twitter user—a celebrity— who had the largest number of followers; the comedian who owned this account had breast cancer, and her Twitter feed was followed by 33,828 other users. The Twitter account of user0 with the second largest number of followers (2,463 followers) was selected for the previously described December 4, 2011, analysis of the relationship between users. The results of this analysis are shown in Figure Figure4.4. The 5 accounts with the most followers all belonged to patients with breast cancer; the remaining 3 accounts from the “Top 5” accounts were those with 1,593, 1,518 and 1,241 followers, respectively.

Figure 4Relationships between users. Correlation diagram centered on user0. The users connected by the arrows mutually sent one or more replies. The search was conducted to incorporate friends’ friends. userXX(outlined) : cancer patients. Users who listed ...

As shown in Figure Figure4,4, it was found that there were cancer patients among the followers of user0. Those followers included 3 breast cancer patients, 1 uterine cancer patient and 1 user who was believed to be a cancer patient. It was found that these cancer patients communicated with one another via tweets, revealing real-life examples of information exchanges among cancer patients via Twitter. Among the 5 “power accounts” with the greatest number of followers, the fourth-largest account also had a network of cancer patients on Twitter (data not shown).

Content of tweets

The user accounts of cancer patients among the 6 user accounts that had relationships with user0 (5.5 tweets per day) as shown in Figure Figure44 were these 5 accounts: user16, user17, user23, user24 and user27, showing tweet numbers of 44, 15, 16, unknown and 5.5, respectively, when the search was conducted. Because user24 was set as a non-public user, it was not possible to conduct a search of the user’s tweets.

As a result of our investigation into the contents of the tweets by user16, who had 44 tweets (the largest number) per day, with another 12 users (who were believed to have a relationship with this user, as shown in Figure Figure4),4), the contents were classified into categories such as greetings (“good morning,”“good night”); daily conversations or chats (“I did so and so today”); and conversations concerning cancer treatments (“I am going to the hospital today.” The total number of tweets for each category was as follows: 176 for greetings, 139 for daily conversations or chats, and 24 for conversations concerning cancer treatments. The contents of the exchanged tweets about cancer treatments through the network shown in Figure Figure44 are shown in Table Table2.2. These tweets represented psychological encouragement (12 tweets), greetings when visiting the hospital or reports on the outpatient ward (10 tweets), tweets concerning physical condition (6 tweets) and advice for treatment (2 tweets).

Table 2Conversations regarding treatment*Go to:Discussion

This study indicated that Twitter could be a valuable medium for sharing information among cancer patients. A total of 51 Japan-based cancer patients with Twitter accounts were determined by our study to be influential Twitter users as based on their having 500 or more Twitter followers. Although this study examined a considerably smaller sample of influential Twitter users (n=51) than did a previous United States-based study of the “power accounts” of influential tweeting physicians (n=260) [12], our research revealed that cancer patients can empower themselves by tweeting information about their own medical condition and treatment and by providing a forum for the discussion of specific topics.

The breakdown of influential accounts was found to be in the order of breast cancer, leukemia, colon cancer, cancer of the uterus and malignant lymphoma; this differs significantly from the order of cancer prevalence in Japan, in which the top 5 types of cancer are, in descending order: stomach cancer, lung cancer, colon cancer, breast cancer and liver cancer [19]. We found it interesting that the cancer prevalence of our influential users and the general population were so dissimilar. We expect that this discrepancy is associated closely with the widespread Internet usage of the younger population, which made up a disproportionate percentage of our studied Twitter users. Compared with other cancers in our study, breast cancer was seen most in women in their late 30s to early 40s. The Internet usage rate of Japanese women in this age range is as high as 95% [24]; we believe that this high Internet literacy confirms our findings.

Furthermore, while malignant lymphoma or leukemia is a disease with lower numbers of affected people, we found users with these types of cancer to be highly influential in terms of their Twitter connections. This may be a result of the background in which the treatments for leukemia or malignant lymphoma are mainly centered on chemotherapy, with a long treatment period, indicating that treatment for the disease affects the daily life of these patients for a prolonged period. These patients are thus also more likely to have more opportunities over an extended period of time to engage in timely discourse about their individual conditions and treatment.

To better understand how cancer patients influence their followers via Twitter, direct investigation involving the use of a survey of cancer patients with Twitter accounts may be necessary in the future. Examining the distribution of user activities did not reveal any significant differences among the different types of cancer noted in users’ profiles. On the other hand, our study showed that a smaller number of extremely active accounts existed for each type of cancer examined (Figure (Figure3).3). Under the hypothesis that such small numbers of active users serve as the center of the patients’ networks on social media, we investigated the connections related to the most active users. As a result, we were able to demonstrate that information was exchanged in real time among patients (Figure (Figure4).4). Based on this finding, we were able to demonstrate for the first time that an information exchange network among patients via social media had already been established.

Of further interest to us is the content of the tweets exchanged among patients. Most of the examined tweets included details of daily life such as greetings or messages concerning treatments, and it was found that almost no medical information concerning cancer was exchanged; this went against our initial expectation that cancer patients would use Twitter to primarily discuss specific cancer-related news and medical information.

Our findings demonstrate that patients use Twitter as a tool of psychological support by being connected among patients, even though it is not a standard or face-to-face method of discussing such information. This observation may support the notion that Twitter plays a unique role that is different from similar-seeming Internet tools such as hospital websites in which patients primarily obtain medical information [2] or blogs in which patients can share their experiences [1]. We expect that as Twitter usage becomes more widespread in the coming years, there will be an attendant rise in the medium’s importance to maintaining—and perhaps improving—public health [25]. However, the dissemination of Twitter among patients in the future may generate various methods of usage, making it necessary to continue careful observation in the future.

Twitter can be used not only with real names but also anonymously, which is often controversial. In our study, 53% of the accounts included the users’ real names, and 41% of the accounts included personal pictures. Investigation into the Twitter accounts of physicians revealed that 78% of these accounts displayed the users’ real names and personal pictures [12], indicating that anonymity is more preferred among patients than physicians. We expect that this discrepancy can be correlated to the fact that information about individuals’ medical conditions is considered personal and confidential, and that revealing a Twitter account user’s name could lead to the disclosure of potentially private medical details. Many people consider it necessary to maintain anonymity when sharing information through Twitter and other social media; such anonymity may be linked to Twitter’s ability to maintain its relevance among the patient populations that use it.

Limitations

While this study demonstrated that a patient network via Twitter is in the process of being established, there remain several issues to be discussed. First, this study targeted only those Twitter users who described “cancer” either in Japanese Hiragana, Katakana or Kanji letters in their profiles. However, this does not mean that all users who were cancer patients included relevant disease names in their profiles; the absence of cancer details in user profiles could potentially exclude an unknown number of cancer patients from analysis.

Second, because of limitations in search tool performance, we were unable to conduct a large-scale comprehensive qualitative analysis. It is expected that the improvement of search-tool performance will enable larger-scale studies in the future.

Finally, future research into this field of study will need to clarify the types of information most often disseminated via social media. It has been reported that social media often include information that is not necessarily beneficial to the health of media users [26]. Furthermore, Chretien et al. (2011), who studied physicians’ accounts on Twitter, stated that there existed, although rarely, some ethically problematic content, which could possibly violate the patient privacy [12].

Twitter and other forms of social media can prove quite useful in permitting the rapid and timely dissemination of health-related information. However, as social media continue to evolve, they will need to find ways to provide relevant health information without obstructing patient privacy or delivering inappropriate content. Overcoming this point will be an important element in the dissemination of medical information via social media.

Go to:Conclusions

Twitter users with a variety of types of cancer have proved influential on their followers, as demonstrated through the information exchange engaged in by account owners and their followers. Twitter represents a timely and low-cost medium for cancer patients and others seeking information about specific medical conditions, but our study found that the majority of the tweets posted by the 51 users with “power accounts” focused on conversational details (e.g., greetings, cancer treatments) and psychological support rather than the expected medical news and information. Furthermore, Twitter will need to evolve further in order for patients to fully embrace the power of this social medium, as many people are reluctant to reveal personal details via their Twitter accounts. Our study has demonstrated that Twitter is a powerful medium capable of connecting cancer patients via the establishment of a patient network.


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Vendors lose millions in leaking new Jinja market

Vendors lose millions in leaking new Jinja market | Health and Technology | Scoop.it
Faults. The market which was recently discovered to have cracks in the walls, now has a leaking roof

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How social media activity can improve search rankings

How social media activity can improve search rankings | Health and Technology | Scoop.it

Being active on social media is pretty much a given for brands and organisations nowadays. The vast majority of consumers are active on the social media sites, and it is on those sites that opinions about brands are formed and discussed. Having a ‘voice’ or a spokesperson who engages with potential and existing customers and encourages positive interaction is necessary to improve overall perception. But the right kind of social activity can also boost search rankings, both indirectly and directly.

There are several ways to boost a brand’s rankings via social media activity.

The search engines are in the business of providing relevant search results to their users, and part of the search engine algorithm looks for indicators of popularity and credibility. When a link to a specific piece of content or web page has been shared and clicked on many times, the search engines recognise the volume of clicks as an indicator of credibility and interest, and therefore allocate a higher ranking to that content. One way to get a high volume of clicks on a link back to your site is to share it through social media, and if it is deemed of interest to your target market, and seen as credible, it will be shared and linked to. The more that content is shared, the more chances there are of it being clicked and linked to. Social sharing increases the visibility of a link, and therefore the likelihood of gaining more clicks.

The search engines also rank content on the basis of quality, and a sign of quality content is often judged by the length of time a user might spend reading that content (hence the importance of monitoring visit duration on a website). Another indicator of quality is interaction – on social media sites, this translates into retweets; plus ones (+1’s); likes and comments. These social signals give a positive indication of quality, and hence that content would be deemed of interest to searchers and be ranked higher than other similar content in search results. Encouraging social interaction is therefore an important part of any social media marketing strategy.

You may have noticed Google plus (G+) posts featuring in search results for phrases which are used in the titles of those posts. The reasons for this are twofold: (1) that G+ content is prioritised in search results, and (2) the majority of G+ users are often signed in to google when searching. If those users then search for phrases which match those in a connection’s G+ post, that post will feature in the results shown to those users. In the same way, +1’s from connections will also be shown in relevant search results – Google sees the +1’s as a recommendation of good quality content, and therefore prioritises that content in the search results for connected users.

Key takeaways:

Make brand content easily shareableShare links on social mediaEncourage interaction with your contentMeasure engagement to see what resonates with your target marketBuild and maintain a presence on G+

- See more at: http://www.eurocomhealthcare.com/how-social-media-activity-can-improve-search-rankings/#sthash.IXCmbuGG.dpuf

 


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Patients turn to social media to find specialty medical care

Patients turn to social media to find specialty medical care | Health and Technology | Scoop.it

 It’s a story that has been told many times in these pages: A patient is told that they are afflicted by an inoperable brain lesion, only to find hope and—often—a cure by traveling to Barrow Neurological Institute.

The story of Tony Thompson, a 29-year-old artist from upstate New York is no different in that regard.

However, how he found his way here highlights an emerging trend across medicine—people using social media communities in their effort to find specialty medical care.

Bleed after bleed

Thompson first experienced the symptoms of what would eventually be diagnosed as a cavernous angioma—a benign tumor composed of dilated capillaries—in September of 2011. The tumor was located in his brainstem, and when it began to bleed into the surrounding tissue, his symptoms quickly worsened.

“I was just shocked that these symptoms progressed to something like this, to the point where I couldn’t even stand up, and to find out that there was actually blood in my brainstem,” says Thompson. “I am very healthy and active, so to have this random thing making me lose control of my body was terrifying.”

He would eventually spend 57 days in the hospital recovering from the initial bleed. During that time, his search for answers began.

Wanted: A second opinion

While Thompson was in rehabilitation, friends of his family were hard at work finding neurosurgeons specializing in the treatment of lesions of the brain stem. They soon realized that they would be dealing with a very short list, and that Robert Spetzler, MD, of Barrow was at the top.

However, as Thompson relates, his research into the work of Dr. Spetzler had a distinctly social flavor.

“My research was mainly through Facebook. I was able to get in touch with people—some who had already been treated at Barrow by Dr. Spetzler and his team—who had great stories of recovery. Some of them couldn’t find anybody willing to perform their surgery for years before they found Dr. Spetzler.”

After his cavernous angioma bled for a third time, Thompson decided to travel to Barrow and join their ranks. He is now back at home, continuing rehabilitation and hoping for the best.

"I still have a long way to go, but my symptoms have slowly gotten better after surgery," Thompson said. 

Ahead of the digital curve

Thompson’s story and others like it have gotten the attention of leadership at Barrow. As a result, plans are in place to totally redesign the Barrow website in 2015. A significant investment is also being made on improvements to Barrow’s online second opinion program.

“We’re really seeing it emerge as a huge trend in healthcare. People want more information about their diseases and their doctors, and they want it all at their fingertips,” says Barrow Director of Informatics Judd Shaft.

For his part, Thompson is a big believer in the power of the web and social media to help people find the care they need.

“It kind of shocked me how many people in these online support groups had been told that their conditions were inoperable,” he says. “Many of those same people end up getting treated by Dr. Spetzler at Barrow. He is easily the most-referenced surgeon in those groups.”

He also noted that for many in the groups, their participation doesn’t end with recovery.

“We keep checking up with each other to this day,” he says. “We’ve made new friends—we call each other brain buddies.”

 


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FDA Approval Process Could Benefit from Big Data, Social Media

FDA Approval Process Could Benefit from Big Data, Social Media | Health and Technology | Scoop.it

Data aggregated from electronic health record (EHRs), social media platforms, and other sources could hasten the medical device development process and help regulators monitor safety, according to an assembly of bipartisan experts.

Earlier this week, speakers at the Bipartisan Policy Center’s “FDA: Advancing Medical Innovation” initiative lamented the lag time during the medical device discovery process, a process that hasn’t been updated since 1997, according to former United States Senator Bill Frist. This has led product developers to take development overseas where patients can be treated faster and with less red tape.

According to a Healthcare IT News report on the conference, speakers advocated for a Big Data approach to gathering data on medical devices and agreed to encourage Congress to take another look at the FDA’s approval practices.

Device makers “should be able to engage in sophisticated methods [or data collection and analysis] to understand patient preferences. But we’re not taking these well-established methods and plugging them into drug and device development,” noted Marc Boutin, CEO of the National Health Council. He also added that this approach to data has served electoral politics and consumer marketing well.

Patients with medical devices now have the ability to update physicians and researchers in real time by reporting feedback straight into their EHRs via patient portals. They are also likely to discuss their successes and problems with a device on social media platforms and other disease-specific web forums.

“Our inefficient, less-than-modern, drug discovery and device approval process drives up cost and delays treatment,” said Frist. “We must accelerate the process of getting safe and effective drug and medical devices to patients.”

 


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Exercise, Not Diet, Has Most Impact On Weight As We Age

Exercise, Not Diet, Has Most Impact On Weight As We Age | Health and Technology | Scoop.it
It won't shock anyone to know that Americans tend to gain weight as they get older. But it is a little surprising that as Americans age and put on more body fat, the quality of their diets generally improves.

In other words, Americans do try to co...

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Donovan Baldwin's curator insight, April 3, 2015 10:18 AM

While exercise can have a huge impact on weight and health, a healthy lifestyle needs to include both proper nutrition and exercise. Learn more about exercise at http://nodiet4me.com/exercise/ .

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Paracetamol ‘no good for back pain'

Paracetamol ‘no good for back pain' | Health and Technology | Scoop.it
Paracetamol is ineffective at treating back pain and osteoarthritis despite being a recommended treatment, a group of Australian researchers warns.

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How sleep can make you a better leader - CNN.com

How sleep can make you a better leader - CNN.com | Health and Technology | Scoop.it
Many successful leaders have claimed they only need 4-5 hours of precious sleep a night -- but is this really the best for leaders?

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How Fitbit's CEO Sees a Future In the Medical Industry

How Fitbit's CEO Sees a Future In the Medical Industry | Health and Technology | Scoop.it
How Fitbit’s CEO Sees a Future In the Medical Industry

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My Africa: The competing visions of Africa's future

My Africa: The competing visions of Africa's future | Health and Technology | Scoop.it
The BBC's Alan Kasujja returns to his native Uganda to meet the young entrepreneurs aiming to create a "new" Africa - while still dealing with the "old".

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Water: What you need to know about keeping hydrated

Water: What you need to know about keeping hydrated | Health and Technology | Scoop.it
For two decades, we've been encouraged — some might say hounded — into making drinking water a habit. We carry it in plastic bottles, reusable canisters, on our backs to suck through elaborate tubing. We might even hire a doctor to have it injected into our veins.

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Dorothy Waxman's curator insight, March 30, 2015 11:16 AM

Not rocket science.

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Social Media to Improve Care in Cosmetic Dermatology

Social Media to Improve Care in Cosmetic Dermatology | Health and Technology | Scoop.it

BACKGROUND

Social media sites, composed of providers, patients, and their social circles, facilitate health and healthcare delivery.

OBJECTIVE

To examine patients' perspective on social media as an information source, communication tool, and referral service through an anonymous survey. In addition, influences on patient Internet personas, an actively constructed online identity, around the time of cosmetic procedures are examined.

MATERIALS AND METHODS

Patients completed an anonymous institutional review board-approved survey during their initial cosmetic visit.

RESULTS

Patients are highly active on social media using it as a multipurpose tool for physician referral services, support groups, and disease education. Patients gathered dermatology information from multiple sources, including friends, family, social media pages, and other online sources, often sharing their own experiences through social media platforms. Patients indicated a desire for provider educational materials on interactive media pages. Most preferred material written by a physician, but some indicated a preference for both physician and lay material. Online images highlighting dissatisfying skin features were influential to select patients, prompting manipulation of online personas and evaluation for aesthetic procedures.

LIMITATIONS

Although the study examines cosmetic patient perspectives, data highlight valuable trends for all dermatologists.

CONCLUSION

Social media can improve patient education, collaboration, recruitment, and online professional image, leading to healthier patient-centered care.


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Adding value to global health-related events: Eight simple Twitter tips

Adding value to global health-related events: Eight simple Twitter tips | Health and Technology | Scoop.it
We help health, development and environment organizations achieve greater impact through writing, editing, design and strategic planning services.

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Hupertan's curator insight, March 29, 2015 5:26 PM

8 tips for your #E-reputation and the eHealth

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EA!OFFICIAL: Kenya, Uganda, South Africa & Nigeria Top TEF’s $100m Entrepreneurship Programme

EA!OFFICIAL: Kenya, Uganda, South Africa & Nigeria Top TEF’s $100m Entrepreneurship Programme | Health and Technology | Scoop.it
eaofficial, fameafrica, africa, entrepreneurs, tef, african, elumelu, tony, tony elumelu, african entrepreneurs, programme, winners, selection, entrepreneurship, teep,...

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[INFOGRAPHIC] The Complicated, Evolving World of mHealth

[INFOGRAPHIC] The Complicated, Evolving World of mHealth | Health and Technology | Scoop.it
[INFOGRAPHIC] The Complicated, Evolving World of mHealth

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Social Media and Diabetes: Can Facebook and Skype Improve Glucose Control in Patients

Social Media and Diabetes: Can Facebook and Skype Improve Glucose Control in Patients | Health and Technology | Scoop.it

Social Media and Diabetes: Can Facebook and Skype Improve Glucose Control in Patients With Type 1 Diabetes on Pump Therapy? One-Year Experience

Social Media and Diabetes: Can Facebook and Skype Improve Glucose Control in Patients With Type 1 Diabetes on Pump Therapy? One-Year Experience University Clinic of Endocrinology, Diabetes and Metabolic Disorders, Medical Faculty, Skopje, Macedonia Corresponding author: Goran Petrovski, goran.endo@gmail.com. 2015 by the American Diabetes Association. Readers may use this article as long as the work is properly cited, the use is educational and not for profit, and the work is not altered. - Health care providers are faced with enormous numbers of patients and visits due to the increase in diabetes prevalence (1). As the world is changing, traditional health care services should be adapted for the new era of technology and Internet. Patients use Internet to seek, meet, and interact with a community of patients with similar problems; to share clinical information; and to provide and receive support (2,3). Facebook, with over 1.2 billion registered users worldwide, (4) has specific groups for disease information. The Facebook group Diabetes Macedonia was formed in 2008. It is a closed group that helps patients to share diabetes information and experience. The enormous growth of new users (1,430 patients, family members, and others by September 2014) led to the development of a structured platform by health care providers to adjust and correct the information posted by patients, if needed. The aims of the study were to evaluate results from social media (Skype and Facebook) and CareLink software as tools to improve diabetes control in patients with type 1 diabetes using insulin pumps with glucose sensors. To our knowledge, this is the first study where Facebook is used as treatment alternative to regular clinic visits. A total of 56 children and adolescents with type 1 diabetes, ages 1423, were randomized in two groups: Regular group and Internet group. The Regular group is composed of 29 patients who were treated using standard medical protocol with regular visits at clinic. Data were uploaded at the clinic and interventions (pump settings, basal bolus insulin, and education) were given to the patient by health care professionals. The Internet group was composed of 27 patients who were treated using CareLink software (Medtronic Diabetes). Data were uploaded by the patient at home and interventions (same as Regular group) were given via Facebook (chats) and Skype (sound and video). Both groups had improved A1C at 12 months (Regular group: 7.7 6 1.6% [61 6 17.5 mmol/mol] at baseline vs. 6.6 6 1.5% [49 6 16.4 mmol/mol] at 12 months; Internet group: 7.8 6 1.9% [62 6 20.8 mmol/mol] at baseline vs. 6.4 6 1.6% [46 6 17.5 mmol/mol] at 12 months, P , 0.05 at 12 months) (Table 1). Internet visits were performed with Facebook (54%), Skype (12%), and both Facebook and Skype (34%). Improvement occurred in the first 6 months and was maintained for 6 additional months. There were no differences in acute complications (diabetic ketoacidosis and severe hypoglycemia events), total daily dose of insulin, and weight change in both groups at 12 months. Personalization, presentation, and participation in social media and health care (5) can be tailored to the priorities of the patients. Every Internet visit was personalized with patient needs (appointment date and time) and used active patient participation in the decision-making process of diabetes management. We found that social media use allows patients to gain diabetes knowledge and information and interact in their daily insulin adjustments. Moreover, it could help patients cope better with their daily life. This brief trial suggests that patients prefer to communicate with their health care providers using social media. Facebook and Skype can improve diabetes control similar to regular clinic visits. Acknowledgments. The authors would like to thank all the children and adolescents and their families who participated in the study with great enthusiasm. Duality of Interest. No potential conflicts of interest relevant to this article were reported. Author Contributions. G.P. performed the study concept and design, data acquisition, statistical analysis and interpretation of data, drafting of the manuscript, and clinical revision of the manuscript. M.Z. performed statistical analysis and interpretation of data, drafting of the manuscript, and clinical revision of the manuscript. S.S.S. performed statistical analysis and interpretation of data. G.P. is the guarantor of this work and, as such, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. References 1. Boyle JP, Honeycutt AA, Narayan KMV, et al. Projection of diabetes burden through 2050: impact of changing demography and disease e52 Social Media in Treatment of Type 1 Diabetes Table 1Clinical characteristics of patients enrolled in the study Internet group Men/women (n) Diabetes duration (years) BMI (kg/m2) Baseline TDD insulin (units) Data are shown as mean 6 SD. TDD, total daily dose. 16.9 6 2.7 5.6 6 2.1 22.4 6 3.8 48.6 6 1.9 17.4 6 2.4 5.4 6 2.8 21.7 6 3.4 45.4 6 2.1 prevalence in the U.S. Diabetes Care 2001 ; 24 : 1936 - 1940 2. Ravert RD , Hancock MD , Ingersoll GM . Online forum messages posted by adolescents with type 1 diabetes . Diabetes Educ 2004 ; 30 : 827 - 834 3. Farmer AD , Bruckner Holt CE , Cook MJ , Hearing SD . Social networking sites: a novel portal for communication . Postgrad Med J 2009 ; 85 : 455 - 459 4. Zuckerberg M. Is connectivity a human right ? [Internet]. Available from https://www .facebook.com/isconnectivityahumanright. Accessed 8 January 2014 5. Centers for Disease Control and Prevention. The health communicator's social media toolkit [Internet], 2011 . Available from http://www.cdc .gov/healthcommunication/ToolsTemplates/ SocialMediaToolkit_BM.pdf. Accessed 17 September 2013

 


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Following the Social Media Rules for Pharma and Medical Device Companies

Following the Social Media Rules for Pharma and Medical Device Companies | Health and Technology | Scoop.it

"To tweet or not to tweet?" is often the question for pharmaceutical and medical device companies when it comes to advertising their products in the burgeoning social media environment.

The very specific rules the U.S. Food and Drug Administration has regarding marketing for drugs and devices makes it difficult to market products on platforms like Twitter, Facebook and blogs. Counsel representing these companies should be familiar with several interpretive guidance documents the FDA released last year that help explain the agency's thinking as it grapples with emerging and future social media platforms. The issuance of guidance on social media was required by the 2012 "Food and Drug Administration Safety and Innovation Act" (FDASIA), Section 1121. This required the FDA to, by August 2014, "issue guidance that describes FDA policy regarding the promotion, using the Internet (including social media), of medical products that are regulated by [the FDA]." The FDA complied and issued three sets of guidance related to social media in 2014, with two more still pending. Though these guidance documents are not regulations, they represent the FDA's current thinking and best practice is to follow and comply with them.

Spatially Challenged

One of the guidance documents addresses social media platforms with limited character spacing. The most common example of such a platform is Twitter, which is limited to 140 characters for a single tweet. The FDA guidance says that if an "accurate and balanced" presentation of both risks and benefits is not possible within the constraints of the specific platform, the company should reconsider using that platform. In other words, if a company cannot present both the benefits and the warnings and risks about a product in the space provided, it should not advertise it there.

The FDA rules on labeling govern how a company is allowed to market its product. The agency requires company advertising to meet several requirements: be truthful and non-misleading (FD&C Act 502(a), 201(n)); include certain information, such as the indicated use and risks (21 CFR 201.100(d), 201.105(d), 801.109(d)); be prominently placed on the label; and any advertisement that makes representations about drugs must include certain risk information (502(n), 21 CFR 202.1). Advertising on social media must be presented in a fair and balanced way.

Handling Misinformation

Most of us are familiar with Internet "trolls," those sometimes angry and often misinformed commenters to online articles or blog posts. What happens, however, when someone posts something online about your client's medical device or drug that is false? What if, say, this person posts that the drug is dangerous and caused Side Effect X and killed his elderly mother who had diabetes? What if the company knows the drug does not cause Side Effect X, or the drug was specifically labeled warning people with diabetes to not take it? It is these types of situations where a company may feel the need to say something—so others do not take the drug incorrectly and to protect its brand.

The FDA has issued guidance on this type of situation. The agency understands a company cannot be the sheriff of the Internet and correct, much less know about, each instance of someone saying something wrong about a company's product. Its guidance states a company is not responsible for user-generated content on social media platforms it does not operate or control. This means that if misinformation is generated in a tweet or Facebook post, the company has the option, but not the obligation, to post something and correct the misinformed poster. However, if the post is on the company's page, or in a forum the company hosts, then it is responsible for setting the record straight.

Whether the company is obligated to respond to misinformation or voluntarily chooses to respond, the FDA guidance sets forth the following specific things the company must do when responding.

1. Be relevant and responsive to the misinformation

2. Tailor the message to the misinformation

3. Be non-promotional in nature, tone and presentation

4. Be accurate

5. Be consistent with the FDA-required labeling

6. Be supported by sufficient evidence

7. Post in conjunction with the misinformation in the same area or forum

8. Disclose the person providing corrective information affiliated with the company that makes the product

Legal Implications of Social Media Rules

The FDA guidance leaves open the issue of liability faced by drug and device companies, even if complying with the rules. Specifically, "failure to warn" claims are possible for a company advertising on social media. Even if it complies with the FDA guidance, a company can still face liability over its labeling. If, for example, a company decides to tweet and tries to highlight the use of the drug with its risk, what if it only includes the most significant risk and not others? Will that expose the company to a failure to warn claim?

In addition to product liability, social media advertising raises the issue of competitors having the ability to bring suit under the Lanham Act (15 U.S.C. §1525). This law allows a private right of action so a party may sue a competitor for any false or misleading description or representation of fact which

" … in commercial advertising or promotion, misrepresents the nature, characteristics, qualities, or geographic origin of his or her or another person's goods, services or commercial activities." Pharmaceutical companies can face Lanham Act liability for many types of claims, including minimizing risks, broadening indications, overstating efficacy and making comparative claims in the absence of supporting head-to-head clinical data.



Read more: http://www.therecorder.com/id=1202721749266/Following-the-Social-Media-Rules-for-Pharma-and-Medical-Device-Companies#ixzz3VZElZUQy

 


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Social Media and Cyber-Risk

Social Media and Cyber-Risk | Health and Technology | Scoop.it

On Wednesday, March 18, 2015, physicians in Northern Virginia met for a special luncheon presentation on cyber-risk, hosted by the Medical Society of Northern Virginia.The luncheon was well attended by physicians and practice managers who were interested that learned from others’ unfortunate mistakes. The speaker, Jason Newton, Associate General Counsel with Medical Mutual Insurance Company of N.C., covered many aspects of cyber-risk in the medical practice including:

• Concepts and ramifications of electronically stored information 

• The ever-growing world of online reviews of medical practices 

• Responsible use of online social identities via outlets like Twitter and Facebook 

• Cautionary tales about traps of EHR documentation 

• Basic steps physicians should take in their professional and private lives to protect themselves from cyber-risk

Patient’s access to new technology presents potential technological traps in your practice.  For example, do you allow your patients to record (visual and/or sound) an office visit, consultation or procedure?  Might a patient have recorded these without your knowledge? These are just two more issues to keep in mind when thinking about technology use in your practice-it works both ways-both the technology you use, and the technology that the patient may use..

There are many new factors to consider in today’s practice, and while it may seem impossible to keep up, Mr. Newton provided some great tips and guidelines on what your practice can do to prevent and protect yourself from social media exposures.

 


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American Medical Schools Aren't Teaching the Importance of Exercise

American Medical Schools Aren't Teaching the Importance of Exercise | Health and Technology | Scoop.it
"I was surprised that medical schools didn’t spend more time on it"

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Anthony Faulkner Coming To Uganda At The Gway Charity Concert – GLOW MAGAZINE UG

Anthony Faulkner Coming To Uganda At The Gway Charity Concert – GLOW MAGAZINE UG | Health and Technology | Scoop.it

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Water: What you need to know about keeping hydrated

Water: What you need to know about keeping hydrated | Health and Technology | Scoop.it
For two decades, we've been encouraged — some might say hounded — into making drinking water a habit. We carry it in plastic bottles, reusable canisters, on our backs to suck through elaborate tubing. We might even hire a doctor to have it injected into our veins.

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Dorothy Waxman's curator insight, March 30, 2015 11:16 AM

Not rocket science.

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Smart clothes: The next big fitness craze?

Smart clothes: The next big fitness craze? | Health and Technology | Scoop.it
Smart clothes: The next big fitness craze?

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Apple collected over 18,000 hours of fitness data for the Apple Watch

Apple collected over 18,000 hours of fitness data for the Apple Watch | Health and Technology | Scoop.it
As the hype for the impending Apple Watch continues, the company gave Good Morning America on ABC news in the US a rare look into their fitness lab.

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Peter Mellow's curator insight, March 30, 2015 10:46 PM

The video at the bottom of this article is impressive!

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University develops program to turn social media into adverse drug reaction data

University develops program to turn social media into adverse drug reaction data | Health and Technology | Scoop.it

A computer science and engineering team from the Carlos III Universidad in Madrid (UC3M) found a way to convert forum posts and social-media comments into adverse drug reaction reports.

The group used natural language processing to “translate social media descriptions of experiences with medicines into structured, codified data that can be used in comparative studies to identify patterns and trends,” In-Pharma Technologist reported Wednesday.

The prototype software analyzes big swaths of online data for mentions of drugs, illnesses and adverse effects, the news outlet wrote. The system also recognizes drugs by both their generic and branded names as well as their active ingredients.

A paper on the subject has been submitted for publication to the journal BMC Medical Informatics and Decision Making.

 


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17 Ways to Lose Weight When You Have No Time

17 Ways to Lose Weight When You Have No Time | Health and Technology | Scoop.it
Trust us, you're not too busy for these easy tips

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Hacking Habits: How To Make New Behaviors Last For Good

Hacking Habits: How To Make New Behaviors Last For Good | Health and Technology | Scoop.it
Hacking Habits: How To Make New Behaviors Last For Good

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