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MyCompanion : un site pour aider les patients ayant une hépatite C.

MyCompanion : un site pour aider les patients ayant une hépatite C. | Santé | Scoop.it
Affrontez l'hépatite C avec le soutien des laboratoires Janssen. MyCompanion est un site qui vous donne les informations et les conseils dont vous avez besoin pour connaître vos options, ce à quoi vous pouvez attendre et ce qu'il faut demander.

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Patients look to digital resources, but apps need more work

Patients look to digital resources, but apps need more work | Santé | Scoop.it

Use of online resources for health-related searches is increasing, and many turn to online communities for mutual support, but the benefits of medical apps are yet to be proven, according to a survey of patients and caregivers.

A recent survey1 of more than 13,600 members of an online, healthcare support community has provided insight into the use of resources, primarily digital and online, by these patients and caregivers to help them better understand and discuss their conditions.

While the current usage of available materials through electronic mediums should provide tremendous optimism to the industry for the future, there is still work to be done before this becomes the standard.

eHealth tools: the patients' choice

When asked how they researched their health condition(s), the vast majority of patients and caregivers who took part in the survey reported that they used various online platforms. Almost 80 per cent indicated using condition-specific websites/blogs in search of a better understanding, while an equally strong showing said they used the less specific route of online search engines.

The use of these online tools far outweighs traditional outlets, whether they be written or live, personal interactions with doctors, nurses or other patients.

The survey respondents who expanded on their information-seeking activities valued education and knowledge as a treasured commodity. Many felt that the better informed they were, the better they could partner with their healthcare professionals.

"'You don't know what you don't know'. This was our #1 issue and unless we found it by our own research, we never heard about it."

"As most people now look up any information they wish to know on the Internet I feel that the information should always be the most recent information on that particular condition. Doctors don't usually like the thought that you are using the Internet but they do not have the time to explain everything so we need to be given reputable sites to use by the Specialists and GPs..."

"I feel a well-informed patient is a better patient. There have been a few times that doctors find things and do not tell me, which affects my decision-making process."

When asked to select the one source they found most helpful, a resounding two-thirds of those surveyed highlighted an online resource (specific websites/blogs, search engines, patient support forums).

While there was strong support for online sources of information, the survey showed there was still much ground to cover, particularly within social media.

Social media: the next healthcare frontier

While the industry works with regulators to understand how it can interact with their consumers on social media and what obligations they have to some of the challenges posed by this novel platform, patients and caregivers are also in the early adoption phase of turning to social media for their medical conditions.

Nearly 90 per cent of all patients and caregivers indicated that they used at least one social media platform for personal reasons. Facebook was the most widely used platform among this group, followed distantly by YouTube, Pinterest, Google+ and a handful of other social media sites.

Interestingly, while it was observed that social media usage decreased as the respondent populations got older, there wasn't a sharp decline, falling below the overall values for each of these outlets, until patients and caregivers reached at least 65 years old, providing support to the argument that social media is not only for young people anymore.

Although the usage of social media outlets is fairly widespread, patients and caregivers turn to these sources much less frequently for their health concerns. Overall, two-thirds of respondents acknowledged using any type of social media for medical use, a significant difference from the stated personal usage of these sites.

Facebook and specific healthcare-focused social networks were the most commonly accessed social media sites for medical information. While the information they gathered here was appreciated, these patients and caregivers primarily valued the connectivity they experienced with others like them on social media, proving to themselves that they were not alone in their struggles.

"Facebook has tons of support groups which provide info and kind word when you feel so alone in the battle."

"I get more useful information from the discussion board at Inspire than I do from my doctor."

"Social media has played an essential role in connecting patients with each other to compare conditions and treatment plans worldwide to ensure your own treatment plans are as optimal as possible."

Given the strong showing of support for online healthcare resources, it would appear that the door is wide open for an almost entirely digital age of medical education; however, patient/caregiver receptivity to the use of smartphones in this space may limit this optimism.

Mobile apps

Although this population endorsed the availability of online tools to help them better manage their health conditions, mobile apps are not as strongly sought-after solutions. When asked, 72 per cent of all respondents said they never used smartphone tools to help manage their conditions.

In an effort to test the concept of integrating smartphones into their daily healthcare plan, those who did not currently use this technology were asked if they at least believed this could prove to be helpful. Astonishingly, nearly 60 per cent of this mobile-naïve population said they did not think it would be a beneficial addition for them. Unlike the situation with social media, the usage of smartphones for healthcare decreased sharply with age, even among middle-aged respondents.



"The overall amount of people who have fully integrated a smartphone into their healthcare routine remains limited"

 

 

The ~25 per cent of those who had used their smartphone to aid in the management of their health conditions most often did so to help prepare for doctors' appointments, to search for information online and for dosing reminders. While some people used their smartphones to either take notes during appointments or to take photos of symptom areas, where applicable, the overall amount of people who have fully integrated a smartphone into their healthcare routine remains limited.

While there is still much ground to cover with integrating smartphones into the healthcare armoury, those who do leverage this technology can prove to be advocates for it, even providing insight into what types of tools would be helpful.

"I find that use of electronic media (smartphone, etc.) is much more useful than paper printed media. If I use my smart phone I always remember to cover all points with my doc."

"Smartphone patient care is in our near future. Data is power and I believe that with an informed patient AND doctor, care evolves more efficiently and quickly."

"It would be very helpful to have an app that doctors can be able to utilise to communicate with their patients."

Looking ahead to the healthcare changes yet to come, it appears that digital and social media outlets will have a warm reception. To ensure that any tools offered through these mediums have a place in the landscape of tomorrow, the industry must first address certain privacy and trust issues. However, once cleared, these will certainly be the standard platform for patient and caregiver information seeking based on findings thus far.

1Inspire Patient and Caregiver Survey.

About the author:

Dave Taylor is director of Research at Inspire. During his career he has worked with 60+ brands and 30 companies across dozens of therapeutic categories to address the opportunities and obstacles that exist in these markets.

Before joining Inspire, Dave worked for a number of prominent research companies, executing both quantitative and qualitative studies. He is also experienced in marketing, brand promotion and business development.

 


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Toutelaloi. Service de veille et recherche sur le Journal Officiel | Les outils de la veille

Toutelaloi. Service de veille et recherche sur le Journal Officiel | Les outils de la veille | Santé | Scoop.it

"Jo Toutelaloi est un service de veille juridique en ligne très pratique pour suivre de près le contenu du Journal Officiel Français.

Ce service encore en phase beta va vous permettre de faire des recherches en texte intégral sur le contenu de tous les journaux officiels parus depuis le 1er janvier 2014. Outre cette fonction de moteur de recherche assez classique, Toutelaloi vous permet aussi de créer des fils rss personnalisés et une veille active sur une ou plusieurs requêtes. Pratique."


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Téléconseil symptomatique ou thérapeutique, par téléphone, mail ou internet : quels sont les risques ? Interview de Patrick de la Grange

Téléconseil symptomatique ou thérapeutique, par téléphone, mail ou internet : quels sont les risques ?  Interview de Patrick de la Grange | Santé | Scoop.it
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Présentation du numéro 10 de la Revue... - Revue Africaine des Sciences Sociales et de la Santé Publique (RASP) | Facebook

Présentation du numéro 10 de la Revue Africaine des Sciences Sociales et de la Santé Publique: Janvier – Juin 2015 ISSN 1987-071 X

Présentation
Créée...

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Twitter officialise l'affichage des tweets des profils que vous ne suivez pas !

Twitter officialise l'affichage des tweets des profils que vous ne suivez pas ! | Santé | Scoop.it
Après avoir confirmer la transformation de certains tweets mis en favoris en retweets dans la Timeline, Twitter vient d'annoncer une autre expérimentation en cours.

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Vie toxique's curator insight, October 17, 2014 3:39 AM
On frôle encore la limite de la confidentialité ! De quoi, j'me mêle Mr Twitter ?
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Doctors use Twitter to advance health care messaging

Doctors use Twitter to advance health care messaging | Santé | Scoop.it

For three nights this Spring, an unusual set of fireworks exploded across the social media landscape with implications for public discussions of health, particularly for health care professionals whose work includes crafting messages for patients.

 

An estimated 746 doctors joined in a twitter chat with the hashtag #cancerfilm in an extended conversation with more than 500 self-described patients, as well as about 12,000 other people who didn't fit either of those labels (but fit 13 other categories.) This three-night, multiplayer dialogue began March 31 and created an "unprecedented" event according to one data junkie, Audun Utengen, of Symplur, LLC. Utengen runs the site www.symplur.com, which provides analytics on healthcare related hashtags.

The jury is still out on whether others will imitate this episode of what is called the "second screen" phenomena in health care. Sports and music fans already tweet comments to each other while athletes and musicians are performing. "Did you see that goal?" But what happened on the three consecutive nights – beginning March 31, was a formal invitation by the US National Cancer Institute (and 18 partner research organizations) for the public to "comment" while watching a public television documentary entitled, "The Emperor of All Maladies," about cancer.

"This opens up a whole new area for conversation in health care," Utengen said in an interview. "This was an explosion of people talking about a disease."

Emperor was a six-hour major television event on the US Public Broadcasting System, PBS, presented by documentary filmmaker Ken Burns, in partnership with WETA, based on the 2010 Pulitzer Prize-winning book by Siddhartha Mukherjee.

Cancer – in the documentary – was portrayed in lethal reality, complete with historic explanations of mistaken ideas and misguided treatments and days when wards full of children faced almost certain death. Some of those on Twitter literally wrote "I'm turning it off now" because they said it was too difficult to watch. Utengen himself, whose family has been touched by pancreatic cancer, said it was not easy to see some images.

But the authenticity pleased some of the patients watching, who tweeted things like, "That's exactly how I felt during chemotherapy" or "I remember losing my hair."

For those who wish to study it, the entire transcript of #cancerfilm is available here. You must scroll to the bottom to set parameters for the time section you wish to read. One social scientist who has been studying social media said parsing the importance from of an event like this is a statistical nightmare. Devin Gaffney is a doctoral student at Northeastern University in Boston, who has studied social media's role in political uprisings, for example.

He said linking "online" conversation to offline behavior for #cancerfilm is tricky. "I think very likely there is a real link there – attention online will likely lead to some degree of attention (and donations, and attitudinal shifts, and improved science literacy), but I don't think it happens in a way that we can directly quantifiably measure." Surveys done months later might be able to pick up an impact, he explained.

During #cancerfilm some researchers posted inspiration and resolve, and even humility when facing new discoveries. Big pharmaceutical companies, including Bristol-Myers Squibb and Celgene, were also tweeting. They were joined by research institutes, such as Memorial Sloan-Kettering and University of California at San Francisco, UCSF. Some of the tweeting provided information on therapies that were discussed inside the documentary itself.

Early days of rad/surg Onc remind me of current days of genomics/targeted therapy – so much to learn! #cancerfilm

— Alok Khorana (@aakonc) March 31, 2015

We're comparing blood samples of #breastcancer patients pre&post surgery looking for mutated DNA (or absence) #CancerFilm #CancerSmart #bcsm

— Sloan Kettering (@sloan_kettering) April 2, 2015

The presence of research institutes tweeting about themselves drew this sharp rebuke from journalist and science communications expert Paul Raeburn.

#CancerFilm stream full of institutions trying to reap some PR benefits from the documentary. Embarrassing.

— Paul Raeburn (@praeburn) March 31, 2015

Other critics of the conversation pointed to a lack of discussion of prevention, and what some called too much hype about new avenues of treatment, especially immunotherapy.

Peter Garrett is the director of communications for NCI, and he saw the six hours of the documentary as an opportunity for outreach. The film was a rare platform for putting information about cancer into the stream of discussion exactly while questions emerged for the audience watching, he explained in a phone interview.

While Utengen praised the NCI for planning and hard work before the event, Garrett said it didn't take much work to prepare. Utengen counted 35 federal agencies tweeting during the event, with the National Institutes of Health, or NIH, as the leader.

 

 

 

In this illustration, you can see breast-cancer researcher Dr. Attai at the near “center” of a conversation network known as #bcsm. Visualization from MDigitalLife (MDigitalLife.com).

 

 

A platform for online patient health care communities

Media relations expert Greg Mathews believes the social media explosion of #cancerfilm will inspire others to attempt to re-create it. "Anyone who saw the impact that #cancerfilm had on the online health ecosystem is going to be building on that model – it was phenomenally successful," he wrote in an email.

Mathews works for W20 Group, a marketing consulting company based in Austin, Texas, that publishes detailed reports on social media in health care. Their "Social Oncology Report," based on 2014 data was published in May.

What made the explosion of conversation so big, Matthews said, was the fertile ground already plowed by the myriad health-care patient communities on twitter. These communities fueled the second-screen event, because they already had online fluency about cancer, he said.

If you aren't familiar, these are communities often run by patients where people gather weekly to talk about diseases during a certain time slot. Two very active chats are #lcsm and #bcsm. Lung Cancer Social Media (lcsm) includes both doctors and patients and is frequently co-moderated by Seattle patient Janet Freeman-Daily. The breast cancer social media chat was co-founded by a surgeon, Deanna Attai of Burbank, Calif. In network mapping done by researchers of social media, Freeman-Daily and Attai, appear "central" to discussions in their respective disease areas.

 

 

   

 

 

During the May conference of the Association of Clinical Oncologists in Chicago, doctors presented research about how some of these hashtags may operate in influencing patient decision-making, but the research is not published yet.

What Mathews finds interesting is how "chat" communities are changing and becoming more diverse, including patients, providers, advocates, researchers and health policy wonks. His company tracks what he calls more than 500,000 "online identities" related to health care internationally. For his clients, which can include physicians, hospitals, pharmaceutical companies and others, he gathers analytics on how their target audiences behave online, and where the clients may reach a given audience with a message.

"I get the point of critics," he explained, who see health-care social media as just one more place for marketing of products, devices and branding institutions. "I understand the skepticism. But we know that emotion is a big part of health, and hope is one of the most powerful emotions."

Hope is a frequent theme of disease-related discussions. Freeman-Daily, for example, is one of the most prominent patient influencers on social media about lung cancer. Her message is: even if you are diagnosed with advanced cancer and given very few treatment options, there may be a clinical trial you could enter.

In her own case, she is currently not showing any evidence of disease, after finding a trial specifically aimed at her cancer's genomic signature and receiving chemotherapy though a Colorado laboratory.

She is also fighting stigma (as she explains in video link) that she blames on people mistakenly believing this cancer is only suffered by those who are smokers. An estimated 10-15 percent of lung cancer is diagnosed in "never smokers."

One of Freeman-Daily's comments during #cancerfilm reflected some of what Mathews observed. Hope is precious.

For researchers, #cancer clinical trials are science. For patients, trials are treatment. Trials are hope. #CancerFilm

— Janet Freeman-Daily (@JFreemanDaily) April 1, 2015

Nobody seems able to explain what the explosion of conversation could yield in terms of a permanent impact. But the fireworks leave a lingering smoke behind. Someone may learn how to read the signal in that noise.

 Explore further: Twitter the right prescription for sharing health research, study says

 


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How Your Patients Use Social Media

How Your Patients Use Social Media | Santé | Scoop.it

How Your Patients Use Social Media

It seems as if healthcare providers have only recently considered using social media to connect with their patients. This might be due to many considerations, not the least of which is protecting patient confidentiality. Social media is a great marketing tool that will help build your practice and help your clients. Learn how your patients are using different social platforms and understand how your practice can reach out.

Growth of Social Media

According to the Pew Research Center, Facebook is the most popular site, (as of September 2014). Facebook is no longer experiencing the growth surge that it did just a few years ago, but the user is engaging with it more than they used to. LinkedIn, Instagram, and Pinterest are seeing significant growth and gaining more popularity among adults who use social media.

Who Is Using Which Platform?

Over 52 percent of adults who go online use two or more social media sites. Around 56 percent of adults 65 and older who are online use Facebook. In the younger crowd, ages 18-29, 53 percent of the ones who go online are on Instagram. When it comes to Pinterest, you will reach more women than men. LinkedIn is growing among the college-educated. Around 50% of the internet users who have higher education backgrounds use it.

Facebook is by far the most popular platform, and it seems to be home base for many people. Around 70 percent of individuals who use check in daily at least once. Just a year ago, that figure was only 63 percent. The number of people who use Facebook hasn’t changed, but how much they use it has. About 36 percent of Twitter users check in daily, but this is a 10 percent drop from last year. LinkedIn has more users, but they are not logging on with more frequency.

Using Social Media as a Tool

As a healthcare provider, you do need to be cautious about how you use social media in your practice. However, when used appropriately and with forethought, it is a good marketing tool. You can also increase your patient’s awareness of health issues that they may forget. A quick reminder to come in a get a flu shot during the season benefits the community and keeps your patients healthy.

Develop a social media strategy and risk management plan now to fully utilize the capability of it, while maintaining the legal requirements for your business. This technology has a place in your marketing plan, but you do need to proceed wisely to get the full benefits. Reach out to your patients and build your practice wisely.

 

 


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PatientView's curator insight, March 9, 2015 6:31 AM

Social media has scaled up patient empowerment by reinforcing networking

Veena Lingam's curator insight, March 9, 2015 11:46 PM

Responding to comments in a timely manner becomes important due  to ethical reasons contributimg to  ongoing monitoring overheads presenting stumbling blocks. 

Tiziano Galli's curator insight, March 10, 2015 5:19 PM

Una volta deciso di "apparire" professionalmente sul web - magari aprendo un blog - e di acquisire una dimensione "sociale" attraverso  l'apertura di "profili personali/professionali" o partecipando alle community, ogni medico/sanitario dovrà, necessariamente, porsi la domanda successiva:

 

Su quale social posizionarsi?

 

Non potrà, in prima battuta, esimersi dal considerare Facebook,  perchè è la maggiore vetrina espositiva per la > parte degli utenti in rete, ma non dovrà limitarsi a questo. 

 

Dovrà prendere in considerazione il suo target specifico e ragionare su quali siti si concentra con maggiore frequenza.

 

Facciamo l'esempio di un ginecologo e la popolazione femminile. Egli potrebbe scoprire che le donne giovani e di una certa età frequentano Social differenti e quindi aprire profili, oltre che su FB anche su Instagram oppure su Tumblr.

 

Non mi dilungo per non complicare il discorso. Leggete questo articolo che tocca proprio l'aspetto della differente distribuzione dei target nei vari social. Ne ho accennato anche io nel mio libro "Medici Pazienti e social media"

 

Costruire una propria identità digitale fa parte di una sensibilità più spiccata nelle nuove generazioni. Frutto, in special modo, della capacità di "ascolto" e di analisi dei target e dei loro comportamenti.

 

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Guide des Raccourcis Clavier pour les Médias Sociaux

Guide des Raccourcis Clavier pour les Médias Sociaux | Santé | Scoop.it

il existe des raccourcis clavier disponibles pour de nombreux réseaux sociaux: Facebook, Twitter, Google Plus, Tumblr et Youtube. C’est d’ailleurs...


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Vie toxique's curator insight, February 24, 2015 3:44 PM

Ça peut toujours servir ...

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Journée de lutte contre les infections sexuellement transmissibles (IST) et promotion de la santé sexuelle

Journée de lutte contre les infections sexuellement transmissibles (IST) et promotion de la santé sexuelle | Santé | Scoop.it
A l'occasion de la célébration du centenaire du décès du Pr Alfred Fournier, la Direction générale de la santé organise une journée de présentation et d'échange avec la participation de l'OMS – département Santé Reproductive et recherches.

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Comprendre la femme et sa sexualité avec Dr Danièle Flaumenbaum - Prévention Santé

Interview du Dr Danièle Flaumenbaum, gynécologue, acupunctrice et auteure du livre « Femme désirée, femme désirante ». Danièle nous parle des troubles de la ...
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