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Social Media and Healthcare
Program evaluation and research of social media strategies in healthcare
Curated by bacigalupe
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Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations

Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations | Social Media and Healthcare | Scoop.it

An increasing number of public/private initiatives are exploring novel ways of conducting scientific research, including the use of social media and online collection of self-reported data.
Research relying on collection of self-reported data by self-selected participants has known methodological limitations, including selection bias, information bias, and confounding.
Such limitations may mean that results and conclusions of research using data obtained through online communities need to be interpreted with caution, as further replication is often required.
The findings of research, including their potential actionability, should be communicated to participants in a way that is understandable, accurate, complete, and not misleading.
The potential for sharing participants' data with third parties as well as the commercial uses of research findings should be disclosed to participants prior to consent.

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Cyberhugs: Creating a Voice for Chronic Pain Sufferers Through Technology

bacigalupe's insight:

Chronic pain is a pervasive and expensive public health problem affecting roughly one-third of the American population. The inability of language to accurately convey pain expressions combined with the social stigmas
associated with discussing pain persuade many sufferers to remain silent about their pain. Gender politics and fear of professional repercussions further encourage silence. This article explores the need for a safe and secure
place for chronic pain sufferers to talk of their pain experiences. The extent to which digital communication technology can fulfill this need is examined. This descriptive study examines the use of one online chronic pain management workshop for its ability to create an engaged community of choice. Workshop admittance was based on participants having a qualifying chronic pain condition. A thematic discourse analysis is conducted of all entries chronic pain participants posted. In addition to goal setting, participants discuss the ways in which pain affects them on a daily basis. Two themes emerge: validation and encouragement. This study suggests that chronic pain users need a discursive space to legitimate their chronic pain identity. It confirms that online websites and virtual audiences facilitate disclosure and allow for authentic communication. The benefits of computer-mediated discussion as well as its limitations are examined

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Patient Bill of Rights for Psychotropic Medications

The pharmaceutical industry has made it very difficult to know what the clinical trial evidence is regarding psychotropics. As a consequence, primary care physi
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The Robot Will See You Now

The Robot Will See You Now | Social Media and Healthcare | Scoop.it
IBM's Watson—the same machine that beat Ken Jennings at Jeopardy—is now churning through case histories at Memorial Sloan-Kettering, learning to make diagnoses and treatment recommendations.
bacigalupe's insight:

IBM's Watson—the same machine that beat Ken Jennings at Jeopardy—is now churning through case histories at Memorial Sloan-Kettering, learning to make diagnoses and treatment recommendations. This is one in a series of developments suggesting that technology may be about to disrupt health care in the same way it has disrupted so many other industries. Are doctors necessary? Just how far might the automation of medicine go?

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Social Media for Social Good :: Your Nonprofit Tech Checklist

Social Media for Social Good :: Your Nonprofit Tech Checklist | Social Media and Healthcare | Scoop.it
At the end of the Social Media for Social Good: A How-To Guide for Nonprofits is a nine-page "Nonprofit Tech Checklist" which I have copied and pasted below. Each item on the list is discussed in t...
bacigalupe's insight:

At the end of the Social Media for Social Good: A How-To Guide for Nonprofits is a nine-page “Nonprofit Tech Checklist” which I have copied and pasted below. Each item on the list is discussed in the book and some items won’t make sense unless you have read the book, but most will. I hope you find it useful. That was my number one priority when writing the book… to create a comprehensive, useful social and mobile media how-to guide for nonprofits. Oh, and the book tour thus far has raised more than $14,000 for nonprofits. The IRS is still trying to wrap it’s head around that one… a book tour fundraiser. 

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Expanding Patient-Centered Care To Empower Patients and Assist Providers: Research in Action No. 5

This report describes tools developed by AHRQ to help patients and their health care providers make better decisions.
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The Internet and Health | Pew Research Center's Internet & American Life Project

The Internet and Health | Pew Research Center's Internet & American Life Project | Social Media and Healthcare | Scoop.it
The internet can be used as a diagnostic tool, for peer-to-peer healthcare, and for self-tracking. We look at the statistics behind these activities.
bacigalupe's insight:

81% of U.S. adults use the internet and 59% say they have looked online for health information in the past year. 35% of U.S. adults say they have gone online specifically to try to figure out what medical condition they or someone else might have. 

39% of online health seekers say they looked for information related to their own situation. Another 39% say they looked for information related to someone else’s health or medical situation. An additional 15% of these internet users say they were looking both on their own and someone else’s behalf.

Seven in ten (69%) U.S. adults track a health indicator for themselves or a loved one and many say this activity has changed their overall approach to health, according to a new survey by the Pew Research Center’s Internet & American Life Project. In all:

60% of U.S. adults say they track their weight, diet, or exercise routine.33% of U.S. adults track health indicators or symptoms, like blood pressure, blood sugar, headaches, or sleep patterns.12% of U.S. adults track health indicators or symptoms for a loved one.

Fore more information on the reports and data associated with these findings, please see: 2012 Health Survey Data.

 
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Ben Goldacre: What doctors don't know about the drugs they prescribe | Video on TED.com

When a new drug gets tested, the results of the trials should be published for the rest of the medical world -- except much of the time, negative or inconclusive findings go unreported, leaving doctors and researchers in the dark.
bacigalupe's insight:

When a new drug gets tested, the results of the trials should be published for the rest of the medical world -- except much of the time, negative or inconclusive findings go unreported, leaving doctors and researchers in the dark. In this impassioned talk, Ben Goldacre explains why these unreported instances of negative data are especially misleading and dangerous.

Ben Goldacre unpicks dodgy scientific claims made by scaremongering journalists, dubious government reports, pharmaceutical corporations, PR companies and quacks

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The Case of the Twittering Kidney Patient: Healthcare and the Ethics of Social Media Monitoring

A look at the ethical issues involved when healthcare organisations chose to conduct social media monitoring.
bacigalupe's insight:

Surveillance, despite the potential justice-centered benefits, almost always carries with it the sense that the object of surveillance is not entirely trustworthy, that they must be observed if the truth about them is to become apparent. If social media monitoring within the healthcare system is not to undermine the trust that is at the heart of the physician-patient relationship, then that sense of mistrust must be avoided. The key to this, I think, may be for healthcare organisations to be a bit more ‘social’ in their social media – that is, not just to ‘monitor’ but to put out some content that can be ‘monitored’ by interested or concerned patients. In other words, make your healthcare organization known to the social media sphere in which it seeks information, spend some of your organisation’s social capital (the excellent healthcare information it has!) and that mistrust can perhaps be avoided.

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Generating Evidence and Methods to improve patient outcomes | AcademyHealth

eGEMs is a free, open access, peer-reviewed online publication that aims to rapidly publish and disseminate best practices, challenges, and lessons learned related to building the tools and infrastructure to conduct CER, patient-centered outcomes...
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Quantifying the digital health revolution

A presentation delivered by Stephen Davies at the Fitness Writers' Association in London, UK


Via Andrew Spong
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Camilo Erazo's curator insight, January 25, 2013 7:35 AM

Doctors will have to deal with a minority of 'super-engaged' patients who attempt to control their bodies through data gathering, analysis and visualization. Are they ready for it?

rob halkes's comment, January 25, 2013 8:39 AM
Personal communication styles have always been around. My hypothesis is that the higher the impact of the health condition and the more vulnerable therapy compliance is (e.g. in (breast) cancer, HIV), the more motivation for patients to tend to issues in coping with their conditions. So, let's not desire to 'connect' all patients, but start to try and learn. Culture and styles of doing care is a learning process..;-)
Rowan Norrie's curator insight, February 16, 2013 5:52 AM

Now is the time of biology, technology and big data! Great overview to show how we are now able to measure billions of datapoints about ourselves, track, analyse and take action accordingly.

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Is Twitter a better predictor of the flu than Google and the CDC? Researcher says, yes

Is Twitter a better predictor of the flu than Google and the CDC? Researcher says, yes | Social Media and Healthcare | Scoop.it
Influenza prediction using Twitter.

Via Dan Baxter
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Dan Baxter's curator insight, January 22, 2013 11:21 AM

Geotagging and tweets show interactions between healthy and sick people. So clever!

Susan Andrews's curator insight, January 24, 2013 3:58 AM

Excellent application of technology. Very smart!

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Craig Lefebvre -Digital health tools that facilitate conversations: Understanding the Social Health Experience


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Equity in the Digital Age: How Health Information Technology Can Reduce Disparities | IssueLab

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Equity in the Digital Age: How Health Information Technology Can Reduce DisparitiesFeb 14, 2013
Publisher(s): Asian & Pacific Islander American Health Forum; California Pan-Ethnic Health Network; Consumers Union; National Council of La Raza
Issue Area(s): Computers and Technology; Health
Geographic Focus: North America-United States Download nowWhile enormous medical and technological advancements have been made over the last century, it is only very recently that there have been similar rates of development in the field of health information technology (HIT).

This report examines some of the advancements in HIT and its potential to shape the future health care experiences of consumers. Combined with better data collection, HIT offers signi?cant opportunities to improve access to care, enhance health care quality, and create targeted strategies that help promote health equity. We must also keep in mind that technology gaps exist, particularly among communities of color, immigrants, and people who do not speak English well. HIT implementation must be done in a manner that responds to the needs of all populations to make sure that it enhances access, facilitates enrollment, and improves quality in a way that does not exacerbate existing health disparities for the most marginalized and underserved.

- See more at: http://www.issuelab.org/resource/equity_in_the_digital_age#sthash.YMNJvMR9.joQ7rMJ9.dpuf

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Teens and Technology 2013 | Pew Research Center's Internet & American Life Project

Smartphone adoption among teens has increased substantially and mobile access to the internet is pervasive. One in four teens are “cell-mostly” internet users, who say they mostly go online using their phone.
bacigalupe's insight:

Smartphone adoption among American teens has increased substantially and mobile access to the internet is pervasive. One in four teens are “cell-mostly” internet users, who say they mostly go online using their phone and not using some other device such as a desktop or laptop computer.

These are among the new findings from a nationally representative Pew Research Center survey that explored technology use among 802 youth ages 12-17 and their parents. Key findings include:

78% of teens now have a cell phone, and almost half (47%) of them own smartphones. That translates into 37% of all teens who have smartphones, up from just 23% in 2011.23% of teens have a tablet computer, a level comparable to the general adult population.95% of teens use the internet.93% of teens have a computer or have access to one at home. Seven in ten (71%) teens with home computer access say the laptop or desktop they use most often is one they share with other family members.

“The nature of teens’ internet use has transformed dramatically — from stationary connections tied to shared desktops in the home to always-on connections that move with them throughout the day,” said Mary Madden, Senior Researcher for the Pew Research Center’s Internet Project and co-author of the report. “In many ways, teens represent the leading edge of mobile connectivity, and the patterns of their technology use often signal future changes in the adult population.”

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The commons of health knowledge - 13 predictions for 2013 - Nesta

The commons of health knowledge - 13 predictions for 2013 - Nesta | Social Media and Healthcare | Scoop.it
bacigalupe's insight:

Big data has been big news in 2012. This year has seen a plethora of new apps, platforms and sensors that help create and capture more data about many aspects of our lives - from fitness and diet to energy consumption and retail. Advances in computer science and digital tools are rapidly improving our ability to analyse a greater volume, variety and velocity of data. Culturally, the shift towards much greater openness has had a significant impact on the public sector with more and more agencies opening up their data sets.Research shows that businesses are increasingly using data analytics to guide their innovation strategies.  

How will this affect how we create and use knowledge about our health? How could we get better at mobilising knowledge held by all of the different people involved in improving health - including doctors and nurses, community health workers, pharmacists, researchers, businesses, patients, families and carers - and make this knowledge widely accessible?  

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The 2012 International Survey of Primary Care Physicians - The Commonwealth Fund

The Commonwealth Fund hosted a webinar on February 5 that examined key survey findings, with commentary and perspective provided by respondents from England, Switzerland, and the Netherlands.
bacigalupe's insight:

The Commonwealth Fund hosted a webinar on February 5, 2013 to discuss findings from the latest International Health Policy Survey of Primary Care Physicians. Published in November, the survey, conducted in Australia, Canada, France, Germany, the Netherlands, New Zealand, Norway, Switzerland, Sweden, the United Kingdom, and the United States, looked at such issues as patient access, health information technology, communication, overall views of the health system, and job satisfaction.

A free 90-minute webinar sponsored by The Commonwealth Fund examined key survey findings, with commentary and perspective provided by respondents from England, Switzerland, and the Netherlands. The Fund's Robin Osborn, vice president and director of the International Program in Health Policy and Innovation, moderated.

What: The Commonwealth Fund Webinar: 2012 International Health Policy Survey of Primary Care Physicians

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Watch now: Partnering with Your Doctor | My Health Counts! | WNED Video

Watch now: Partnering with Your Doctor | My Health Counts! | WNED Video | Social Media and Healthcare | Scoop.it
Build and grow your relationship with your doctor and other health care professionals.
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Patient-centred healthcare, social media and the internet: the perfect storm? -- Rozenblum and Bates -- BMJ Quality and Safety

Patient-centred healthcare, social media and the internet: the perfect storm? -- Rozenblum and Bates -- BMJ Quality and Safety | Social Media and Healthcare | Scoop.it
bacigalupe's insight:

Patients are central to healthcare delivery, yet all too often their perspectives and input have not been considered by providers.1 ,2 This is beginning to change rapidly and is having a major impact across a range of dimensions. Patients are becoming more engaged in their care and patient-centred healthcare has emerged as a major domain of quality.3–6

At the same time, social media in particular and the internet more broadly are widely recognised as having produced huge effects across societies. For example, few would have predicted the Arab Spring, yet it was clearly enabled by media such as Facebook and Twitter. Now these technologies are beginning to pervade the healthcare space, just as they have so many others. But what will their effects be?

These three domains—patient-centred healthcare, social media and the internet—are beginning to come together, with powerful and unpredictable consequences. We believe that they have the potential to create a major shift in how patients and healthcare organisations connect, in effect, the ‘perfect storm’, a phrase that has been used to describe a situation in which a rare combination of circumstances result in an event of unusual magnitude creating the potential for non-linear change.7

Historically, patients have paid relatively little attention to quality, safety and the experiences large groups of other patients have had, and have made choices about where to get healthcare based largely on factors like reputation, the recommendations of a friend or proximity.8 Part of the reason for this was that information about quality or the opinions of others about their care was hard to access before the internet.

Today, patients appear to be becoming more engaged with their care in general, and one of the many results is that they are increasingly using the internet to share and rate their experiences of health care. They are also using the internet to connect with others having similar illnesses, to share experiences, and beginning to manage their illnesses by leveraging these technologies. While it is not yet clear what impact patients’ use of the internet and social media will have on healthcare, they will definitely have a major effect.

Healthcare organisations have generally been laggards in this space—they need to start thinking about how they will use the internet in a variety of ways, with specific examples being leveraging the growing number of patients that are using the internet to describe their experiences of healthcare and how they can incorporate patient's feedback via the internet into the organisational quality improvement process.

  
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Dot Com v. MD: Health Advice & Resources Online | The Kojo Nnamdi Show

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Three-quarters of Internet users in the U.S. are going online to answer questions about their health. But with hundreds of thousands of health websites, separating the useful and reliable from the questionable and potentially harmful can be a tough task. We look at how Americans are using online health resources and how they're changing the doctor-patient relationship.

GuestsDr. Rahul Parikh

Pediatrician and writer.

Susannah Fox

Associate Director, Pew Internet & American Life Project, Pew Research Center.

 Comparing Online Symptom Checkers & Their Medical Diagnoses

Do an Internet search for "symptom checker" and the top results are likely to be WebMD, Mayo Clinic and Drugs.com. Health websites like these yield a list of possible diseases and conditions that match at least one of your symptoms selected from a drop-down menu of factors. Though all include disclaimers about the medical advice given and recommend calling 911 if symptoms worsen or persist, the variety of possible diagnoses can vary widely among the websites.

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Reference for becoming an empowered patient.

Reference for becoming an empowered patient. | Social Media and Healthcare | Scoop.it
I help build open source software tools that patients can use to have greater control and influence over their own healthcare (like the Direct Project and Your Doctors Advice). As as result, I've become quite familiar with other tools that do the same sorts of things. There is a community of patients who are deeply interested in the ways in which they can become more engaged and how they can specifically use technology to achieve this. This community calls themselves epatients. The epatient community asked me to write a short collection of resources for "becoming an epatient."

The "e" in epatient is intentionally obscure. The initial assumption is that the "e" stands for "electronic," as it does in "email." But in fact, the "e" stands for "engaged" or "empowered." Nonetheless, reference to email is intentional: The epatient community recognizes that leveraging data is a critical part of empowering a person who happens to be sick. Patients must be "electronic" to become fully "engaged." I think of epatients as the healthcare equivalent of makers and hackers. More importantly, they are the people I have in mind when I write software.

Engaged patients get better healthcare. Not just a little bit better. Much better. This is not a thesis I am prepared to defend here, except to drop a link to the Journal of Participatory Medicine, which is a good resource for those seeking a full chronicle of this engaged effect (the benefits of engagement have been documented in the healthcare literature for years).

Let's go over some simple concepts that the rest of my epatient advice and resources are based on:

Your doctors are probably not managing your healthcare information. You should assume it is your responsibility. Otherwise, the people involved in your treatment process will often presume that this information simply does not exist.
Other patients, with similar conditions to yours, can have better information about your health problem than your doctors have.
Like the highway system, the healthcare system is generally beneficial, but there are dangers, and you need to learn to avoid them.
And here are two things you should keep in mind:

Whenever I say "patient," I actually mean "the patient/caregiver team." Often, the patient will not have the energy to do what is necessary to be fully engaged. It is critical that when the patient cannot be an epatient, that at least the patient's team be an epatient proxy.
In regard to the "better information" I mentioned above, I don't mean that your doctor is typically wrong and another patient is typically right about your diagnosis or treatment options. While that does happen on occasion, it is not the norm. Another patient's information is "better" because your doctor typically does not have the visceral experience of being a patient. Your doctor doesn't understand which lotion can make all of the difference or what position might let you get some sleep after a rough procedure. There is simply no substitute for experience. Sometimes that experience can make your life a little easier, and sometimes it can help you get the right treatments that literally will save your life. (This is the gist of epatient Dave deBronkart's story.)
The first thing an epatient needs to do is find the right epatient community. For any common illness or group of symptoms, there is a community of people who are already connecting with each other over the Internet. For people with a recent cancer diagnosis ACOR is probably the right place to start. This is one of the oldest, largest and most active epatient communities. Sometimes, the tools that a particular community of epatients choose might be a little old school — things like traditional forums, or even list-serves. Do not judge a community by its adoption of technology, judge it by its activity level.

There are efforts to create technology solutions that are specifically designed to enable patient communities. For a good example, check out PatientsLikeMe, which is representative of patient communities drifting more toward "patient social media." I am happy to say that epatient tool makers like me are coming up with cool stuff constantly. But the mature epatient is not impressed by new and shiny. Remember, it is the relationships and insights that matter here, not the technology. Whenever possible, you want the right information delivered over the wrong technology medium, rather than the other way around.

For any serious common healthcare condition, there are probably several different communities of patients online that you can meet with. For common conditions, you might also be able to find a specific meetup in your area, or at least some kind of epatient meetup. If you have a rare disease, you might have trouble finding local resources, and you might only have one or two online communities to choose from. But for rare diseases, the online patient community as a whole is typically better informed than the average primary care physician on a particular condition. Sometimes a physician might not understand or recommend treatment options that are offered outside their local healthcare community, an issue that can be compounded when they are unfamiliar with a particular type of diagnosis. It is even more critical for rare disease patients or caregivers to find a patient community and listen to them. For rare diseases and conditions, it is critical to understand what treatment options are offered in other areas and to be fully informed regarding sham clinics that often operate in under-regulated areas.

How do you know you've found the right community? Here's a good rule of thumb: If you can't get a real response to a simple health question from the community within 24 hours, you should probably move on if there are other options. Healthy epatient communities are vibrant and alive.

You should also consider joining the Society for Participatory Medicine (SPM). The mailing list for the SPM is one of the most important cross-condition meeting places for epatients.

If you are interested in the technology side, also pay attention to Health 2.0 (#health20), which has a Patients 2.0 (#patients20) community that is concerned with the "electronic" part of epatient. Generally, I find that Health 2.0 is the right place to find out-of-the-box thinking on healthcare information systems, especially those offered directly to consumers. I go there to get the down-low on my competitors and to find collaborators. Matthew Holt from Health 2.0 cross pollinates the healthcare blog, which is also worth adding to your RSS reader.

The cross-disease epatient community uses Twitter more than Facebook or Google+ (for the time being), and the #epatient hashtag is your friend. I also recommend following @epatientdave, @reginaholliday, and @hhask as good starter accounts. If you care about the tech aspects of epatients, then check out @NateOsit or myself (@fredtrotter). And if you're interested in the activist portion of the epatient community, then look at the Occupy Healthcare roster.

Once your healthcare information gets past a certain basic level of complexity, it becomes important that you have a personal health record (PHR). Your doctors should, eventually, be able to update your PHR. That means you need a PHR that supports the Direct Project. Right now, that is a short list, with Microsoft's HealthVault at the top. As a FOSS advocate, that is not an endorsement I make lightly, but Microsoft's health IT team has been surprisingly supportive of open source (i.e. patient empowering) technologies and they have relatively mature Direct support. Indivo is pretty much the only one to consider if you want to run your own PHR (it's open source), but its Direct support is lagging. Something you should keep in mind: If you have only one doctor at a time, you do not need to obsess about the coordination of your own healthcare information; if you have more than one doctor, you do. You can manage this information with a PHR, or a notebook, or even an infographic. What matters is that you need to do it, and do it carefully.

Some of the people in the Quantified Self movement are patients who are trying to use data about themselves to improve their health. If that interests you (if you have a chronic condition, it should), then take a look at the Quantified Self website.

 

There are two types of patients: those who are in crisis mode and those who are in maintenance mode. If you are in crisis mode, and you feel like your whole world has been turned upside down, then I recommend you read Dr. Carolyn Oliver's book "Cautious Care: A Guide for patients." The newest edition of this book is also available as a series of free PDF downloads from the Cautious Patient Foundation website. Here are direct links to the hospital part and the outpatient part. Dr. Oliver's book is like a "defensive driving crash course" for the healthcare system. If you are going to be staying up all night at the hospital (as a caregiver or a patient), and you have no idea what you should be paying attention to, this is the book that you should be reading. (Disclosure: I work for Dr. Oliver at the Cautious Patient Foundation.)

 

Read more at site...


Via Chaturika Jayadewa
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New Era Of Patient Engagement

New Era Of Patient Engagement | Social Media and Healthcare | Scoop.it
Health Affairs is the leading peer-reviewed journal at the intersection of health, health care, and policy.
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Texting the Teenage Patient

Texting the Teenage Patient | Social Media and Healthcare | Scoop.it
Doctors are making house calls via texting, blogs and social networks like Facebook and Twitter.
bacigalupe's insight:

Medical practices are increasingly putting up Facebook pages to promote business and solder their community of patients. By adding social media, pediatricians and clinics are now capturing teenagers, some of their most elusive patients. Unlike younger children, who may see pediatricians several times a year, teenagers visit doctors infrequently. Generally healthy, they may stop by only for health forms for work permits, driver’s licenses and sports teams.

But even as they insist on their growing independence, conflating privacy with secrecy, teenagers can be vulnerable to high-stakes, impulsive behavior. Monitoring them carefully but respectfully is tricky for doctors as well as parents. So while a decade ago practitioners saw the Internet as the enemy, a tool for demanding patients who brandished printouts during visits and called at all hours with obscure questions, adolescent-medicine specialists and pediatricians are now turning technology to their advantage.

The payoff, say doctors who text, tweet and post, is a better-informed teenager who finds social media a faster and less embarrassing means to have questions asked and answered.

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Mobile health: donors should follow, not lead

Mobile health: donors should follow, not lead | Social Media and Healthcare | Scoop.it

 No more preempting local demand with substandard products, the mHealth sector needs donors willing to learn from local actors and invest in sustainable business models


Via Alex Butler
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Accessing Your Health Records

Accessing Your Health Records | Social Media and Healthcare | Scoop.it
bacigalupe's insight:

You have the right to access your health records. You may view or receive copies of your records, or instead request a summary of the information. Ask for an “authorization for the release of information” form. Complete the form and return it to the facility as directed. Most facilities do charge for copies. The fee can only include the cost of copying (including supplies and labor), as well as postage if you request the copy to be mailed. It can take up to 60 days to receive your medical records, so ask when you can expect to receive the information you requested.

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