The online conversation about health is being driven forward by two forces: 1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other.
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|Rescooped by Lionel Reichardt / le Pharmageek from Pharma: Trends and Uses Of Mobile Apps and Digital Marketing|
While the notion of online influence, with accompanying tools such as Klout, may be a new concept within the digital world, finding those individuals that hold most sway with their peers was already critical in every business sector way before the internet sprang to life.
The pharmaceutical industry, for example, has historically invested enormous amounts of money into identifying and engaging with those medical influencers who can potentially make or break its new therapies. These ‘super influencer’ doctors, known as Key Opinion Leaders (KOLs) are the ones other prescribers look to for guidance when treating their patients; the ones who are the most prolific authors and speakers within medical journals and at congresses.
But as the virtual world took hold, a new breed of KOLs has emerged – the Digital Opinion Leaders (DOLs). These new, tech-savvy doctors are taking short cuts to greatness, using online engagement channels such as Twitter, LinkedIn, Facebook, medical forums and even personal blogs to bolster their credibility in timescales that the old KOLs could only dream of. Everyone in pharma started turning their gaze to these new influencers.
The trouble is that, while everyone was looking over there, a new breed of influencers has used the internet to rise to prominence. They’re not doctors at all and they are potentially much more powerful than any KOL or DOL. They are patients.
These new Patient Opinion Leaders (POLs) – a phrase I coined when speaking with one of them (a highly energised and intelligent cancer survivor called Andrew Schorr) recently – are the most empowered and educated of all patients. They are the ones taking a thorough and deeply scientific interest in their own illness and using the power of social media to amplify their voice so they can help others.
Traditional healthcare systems, which revolved around the pharma-to-doctor and doctor-to-patient relationships, are therefore being blown out of the water by this new dynamic. While the cynics may claim that the noise created by POLs has little real impact on healthcare decisions, research with experts in this space suggests otherwise.
Right now POLs are:
Having informed discussions with their doctors about medical intervention, often leading to changes in treatment.Inspiring other patients to have similar conversations, plus raising greater awareness of their disease in general.Working closely with traditional patient advocacy organisations on driving policy change.Exploiting and amplifying the impact of non-pharmacological interventions, including self-management via new technology.And now we are coming full circle. These new POLs are finding a seat at the table at medical congresses, being invited to sit alongside traditional KOLs to share their views. If ever there was an argument that virtual influence is of limited value in the real world, then POLs are the ones showing just how wrong this can be.
For the pharmaceutical industry, and all other players in the healthcare space, this signals a new dynamic in the market that they have to embrace; one which is taking them closer to the world of B2C than B2B. It’s yet another argument that this sector must really get to grips with the technology that POLs are using to disseminate their message and push for much closer engagement with them if it is itself to remain an influential player.
So in the world of healthcare, social media isn’t just connecting people, it’s changing the fundamental stakeholder dynamics of how we manage and treat disease, with POLs being at the very core of this change.
Le 28 juin, Alain Ducardonnet a reçu Dominique Donnet-Kamel, responsable de la mission associations de malades à l'Inserm, dans Votre santé m'intéresse, sur BFM Business.
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Searching online for a travel destination or a recipe is simple enough. But what if you wanted to diagnose a medical condition? 35 percent of US adults say they’ve used search tools to find a diagnosis.
Perhaps not surprising to physicians, of these “online diagnosers” less than half (41 percent) got their diagnosis right.
Rare Diseases and Online Community
For rare disease patients, finding others with the same unusual set of symptoms can be a lifeline. With a confirmed diagnosis, patients can connect digitally in a way that is often impossible in real life.
Rare disease is defined in the US as having less than 200,000 patients; in the EU it is one in every 2,000 people. Inherently, patients are sparse for the7,000+ known rare diseases. Only about 50 percent have advocacy groups or organizations fighting on their behalf.
Rare Disease Patients Are Power Internet Users
The Pew Research Internet Project found rare disease patients use the internet to connect with others in far greater numbers than other patients. Overall, only five percent of patients say they have interacted online with a fellow patient, but 50 percent of rare disease patients say they have connected with others sharing their condition.
The mother of a patient in the study noted,
“When a disease is so rare, and there are no folks in your town, and few in your state who are going through what you are going through, you need a support group that encompasses people from all over the world. Getting to know people through the disorder has been an amazing experience and has created incredibly wonderful friendships and ties.”
Where Does the Online Search Begin?
Seventy-seven percent of online health-seekers start with major search engines such as Google or Bing. No matter how their searches begin, physicians wish their clicks would lead them away from social media and toward more technical information sites.
In a recent survey, we asked Sermo member physicians, “Where should rare disease patients search online for information?”
Registries Can Be Life Saving
Rare disease patients like to connect for emotional support and information as their issues progress. For researchers and physicians, online registries are a boon. Clinical trials can find participants quickly and speed the path of a drug to market, potentially saving lives and easing symptoms.
In an NPR article, Sue Byrnes, a patient and founder of a rare lung disease registry said,
“the internet actually facilitates research. Researchers can search that database or ask the foundation to survey its members online for information about symptoms and treatment. Scientists don’t have the time to do these sorts of things, so we do it for them.”
Overall, rare disease patients use online resources to connect, for support in their diagnoses, to compare treatment notes and to participate in research studies. Physicians and researchers use online connections to find patients and collaborate on treatment plans.
As a physician, have you directed a rare disease patient to an online resource? Have you found patients have better outcomes if they have an emotional connection? Has a rare disease patient ever questioned your treatment plan based on information they received online?
A l’heure où le Big Data en santé, les objets connectés et les applications mobiles de santé font régulièrement la Une et alors que la CNIL s’est interrogée récemment sur l’usage des données de santé et / ou de bien-être, l’enquête “Parler de santé sur web, quelle(s) conséquence(s) ?” met en...
The doctor-patient relationship is confidential by nature. Although we encourage you to participate intelligently in social media, at times, this advice can complicate things. A single violation of the Health Insurance Portability and Accountability Act (HIPAA) may cost tens of thousands of dollars in fines, not to mention the criminal charges you could face. Is the use of social media worth it? The short answer is yes—as long as you do it right.
IF YOU WOULD NOT SAY IT IN YOUR WAITING ROOM, DO NOT SAY IT ONLINE
This is an extension of the “think before you post” rule. Before you post anything on a social media site, pause and read it out loud. Imagine you just said what you read in your waiting room in your normal speaking voice. If you feel comfortable with that, then what you have typed is probably fine to post on Facebook or Twitter. If you feel even the least bit uncomfortable with the notion of saying in a waiting room full of people what you are about to post however, do not post it.
DO NOT MIX PERSONAL AND PROFESSIONAL MESSAGES
If you have personal accounts on social media sites, do not use them for professional purposes. Do not “friend” your patients on Facebook: if you want to use Facebook professionally, create a page that people can like. A professional presence can include a personal touch without being overly personal. Pictures from your marathon last week work perfectly, but those from your date last night do not.
MAKE SURE YOUR STAFF UNDERSTANDS YOUR SOCIAL MEDIA POLICY
Although you cannot monitor everything your staff members do when they are not at work, you can outline a social media policy that extends to all of your employees. It does not have to ban social media. After all, odds are that at least one member of your office staff began personally posting Tweets or using Facebook long before your practice had a professional presence on these sites. You can, however, create a policy and ensure that your entire office understands it. At the very least, ban discussing patients online, no matter how vague the details.
DEVELOP A RELEASE FORM FOR PATIENTS’ TESTIMONIALS
For some subspecialties, patients’ photographs and testimonials can really enhance the credibility of a business. Develop a standard release form for these situations, and make sure patients understand exactly how and where their photographs or words will be used. Crop or disguise identifying details to ensure patients’ anonymity.
The Internet is creating new-age hypochondriacs, an all-India doctors’ survey reveals
A recent survey, conducted across 27 cities including Mumbai, Pune, Delhi, Kolkata, Chennai, Bangalore, Hyderabad and Ahmedabad revealed that doctors have been struggling to deal with patients who use the internet to find out what ails them.
Making matters worse are hundreds of thousands of online forums where people discuss their ailments and symptoms, which often result in patients indulging in self-medication, and also end up arguing with doctors upon being told that their ailmentisnotevenclosetotheworsediseasestheyhad imagined, said majority of the 650 doctors who participated in the survey.
The doctors, including specialists and super specialists, termed people's increasing dependence on the internet to find medical cures and search for symptoms as a "major strain on the doctor-patient relationship".
Overloaded with information
Forty-four per cent of the 650 doctors surveyed said that most of their patients were "overloaded with information", while 37 per cent doctors were of the opinion that their patients considered themselves "medical experts" after reading about the ailments on the internet.
As many as 38 per cent of the doctors surveyed said that majority of their patients who participated in online forums to discuss their ailments were "grossly misinformed" about the symptoms.
Dr Pratit Samdani, a general physician at the Breach Candy Hospital said he often comes across patients who imagine the worst after an online search of the ailments.
"One of my patients, a woman in her 30s, was convinced she was suffering from lung cancer. She had been coughing incessantly, and obviously the internet search said it was the most basic symptom of lung cancer. She assumed the worst, but it turned out to be a very minor infection," he said.
Dr Bharat Shivdasani, a cardiologist at Jaslok Hospital, said that it becomes difficult to convince patients who are loaded with "internet information". He said,"A few weeks ago,a man in his 40s visited me for consultation. He was convinced that he suffered from a heart ailment only because he was experiencing pain in left arm. When I told him that was not the case, he ended up arguing with me."
Samdani termed the internet a "medical menace", saying the woman who had assumed she was suffering from cancer insisted on undergoing a series of tests. "I spent an hour trying to convince her that she didn't need to undergo the tests. Internet cannot diagnose ailments or treat anyone," he said.
The survey, conducted by Ipsos Healthcare and Ruder Finn, an international public relations firm, aims to educate people on the dangers of 'over-information' when it comes to ailments. One such victim of medical overload, Dahisar resident Vikas Vyas, said he recently spent sleepless nights assuming the worst of diseases after searching the causes of throat pain on the internet.
The curse of internet
Out of the 650 doctors surveyed, 44% said their patients were "overloaded with medical info gathered online". Thirty-seven per cent doctors said that many of their patients think of themselves as medical experts.
Fifty per cent of the doctors surveyed said internet has made their interaction with patients "difficult".
We surveyed 5,003 patients to determine how they feel about wait times and what might alleviate their frustration.
Patients are nearly unanimous in their dislike of waiting at their doctors’ offices, but there are steps you can take to help alleviate their frustration. Simply notifying patients how long they’ll have to wait can ease the frustration of most patients, as will a personal apology from their doctor when they’ve had to wait.
See download of report
Wolters Kluwer is a market-leading global information services and publishing company focused on professionals.
(December 12, 2012) —
Philadelphia, PA (December 12, 2012) – According to a new Wolters Kluwer Health survey, 80 percent of consumers believe the greater “consumerization” of healthcare – or the trend of individuals taking a greater and more active role in their own healthcare – is positive for Americans. Survey data suggests many Americans feel that a greater role in their care is not only good, but necessary, with 86 percent of consumers reporting that they feel they have to take a more proactive role in managing their own healthcare in order to ensure better quality of care.
Most consumers also say they feel prepared to take on a greater role in managing their own healthcare, with 76 percent reporting that they have the information and tools to take a more proactive role in healthcare decisions ranging from choosing healthcare providers to researching treatment options. Despite feeling prepared, only 19 percent report that they have their own electronic Personal Health Record (PHR).
“With greater responsibility placed on patients to take a role in their own care, it’s essential that consumers have access to evidence-based tools and resources to make informed decisions about their care in partnership with their healthcare providers,” said Dr. Linda Peitzman, Chief Medical Officer, Wolters Kluwer Health. “Access to research-based medical information not only can positively impact quality of care, but it also can lead to improved doctor-patient communication and relationships.”
Survey findings showed that the notion of the “patient experience” is also gaining significance for many Americans. Three in ten adults (30 percent) want their patient experience to be the same as any other customer experience they have – such as shopping, hotel and travel experiences – complete with choices and control.
See report here
|Rescooped by Lionel Reichardt / le Pharmageek from Mobile Health: How Mobile Phones Support Health Care|
Patients Want Digital from Pharma
by Sam Welch on June 9th, 2014
New survey data released by Accenture found that more than 75% of consumers expect drug companies to provide additional services that complement their medical products.
Digital platforms are frequently mentioned as the preferred method of contact. Sixty-nine percent of respondents said they’d prefer information from pharma companies via email, followed by printed materials (66%), websites (48%), mobile apps (44%) and social media (38%). Print media made the list, though patients have made it clear that they are seeking resources through digital channels.
Of interest to marketers, the data show that 64% of patients are willing to trade personal information to get free, relevant content. Not only should we engage around this opportunity, this indicates that marketers can achieve access to more customer data in order to personalize information to each patient’s needs. And digital expands opportunities to track outcomes and tailor content to the individual.
Consumers want more tools to manage their healthcare. If we’re really moving into an age where “an app a day can keep the doctor away,” then we must address this need to make valuable tools available to patients.
Read the full Accenture report here.
|Rescooped by Lionel Reichardt / le Pharmageek from Healthcare, Social Media, Digital Health & Innovations|
After a summit on the disease last year, Team Gleason is now starting 'Answer ALS,' setting up a council of patients, care givers, doctors, researchers, and pharmaceutical companies to find new therapies for treatment, like using stem cells.
|Rescooped by Lionel Reichardt / le Pharmageek from Mobile Health: How Mobile Phones Support Health Care|
In another sign of the changing times, a new CDMiConnect report says that patients are using their mobile devices in waiting rooms and, to a lesser extent, exam rooms, more and more to search the Internet for information about the particular health problem that brought them to the waiting room in the first place.
3000 patients, all 18 years of age or older, were surveyed for the report, named “The Patients First Reports: In-Office Mobile Device Use.” Deb Deaver, agency president for CDMiConnect, said that these 3000 patients had over 200 different health conditions and were surveyed in order to “understand the impact of healthcare at our fingertips and uncover how it has influenced the roles we play in each other’s lives.”
What they found, according to managing partner Deana Peck, was “so surprising that we decided to go ahead and publish our findings.”
For instance, the average patient spends about 20 minutes in a doctor’s waiting room (which, frankly, isn’t so surprising) and, during that time, one in five is using their mobile device to search for health information or, as researchers put it, “[turning those] 20 minutes of tedium into a productive prelude to an active doctor discussion.”
What they also found was that healthcare marketers have an incredible opportunity to leverage this time in order to open a dialogue between patients and their particular healthcare provider, as well as provide valuable content that caters to their particular healthcare needs.
Elliott Tyler, managing partner of CDMiConnect, says that “The majority [of patients] were looking for information specifically around their appointment.“ Tyler added that “They want to know ‘what do these symptoms mean’ and are searching for that confidence so they can engage their doctor about it.”
Interestingly this “search for confidence” is the very foundation for nearly all advertising and marketing. Consumers are always searching for information that will support their motivations and desires, no matter what it is that they happen to be doing, and give them the confidence they want/need to proceed.
Tyler confirmed that “The common theme was patients feeling prepared and confident to have that discussion with their doctor.” He said that, in order for agencies to capitalize on this waiting time, they need to think about information that patients are searching for and then focus their strategy on making that information accessible through related content.
He gave an example about someone “using their phone in an exam room, and during their previous appointment, the doctor said he wanted to put them on product X,” continuing by saying that “And so the patient takes out her phone and looks up the side effects, which sound awful to her, and then during the appointment asks what else she could try.”
Talk about keeping a doctor on his or her toes.
From casual users searching for a little bit of information to help them “sound educated” when speaking to their medical doctor, to “power users” who dig deep into Internet content to learn everything possible about their healthcare situation, this new and improved information availability is changing the way healthcare providers communicate with their patients.
And it’s also changing the way marketers create their healthcare related content.