Articles

Posted in Patient Advocacy

Patients As Partners or Patients As Tokens?

Posted on by Editor

It has been fascinating to watch a discussion take place on social media centering on the pertinent issue of whether patient engagement is a concept which is truly being embraced or is mere tokenism.

The debate started with the announcement of a Canadian Patient Experience Summit:

Connect with other healthcare leaders at the NATIONAL FORUM ON PATIENT EXPERIENCE and help shape the future of patient centred care in Canada.

This unprecedented event provides the perfect platform for exchanging ideas and sharing solutions. The conference is dedicated to addressing the central issues and successful strategies for implementing patient centred care.

However, one vital ingredient from the conference appears to be missing:

The Patient!

Colleen Young asks the obvious question of the organizers: ” Do you know about the patient motto “nothing for us without us”. More and more health conferences (med2.0, medX, Doctors2.0) are including patients by setting up special funds to allow them to participate. How can one develop, and indeed implement, truly patient-focused initiatives without patients?”

Other commentators quickly added their voices to the discussion and while the patient advocate in me nodded in agreement,  the PR professional in me started to see a PR disaster unfold in real-time online.

You’re probably familiar with the work of Lucien Engelen, who recently declared he would boycott any healthcare conference that didn’t include patients, and who asked other healthcare leaders to join him. I think this is a fantastic opportunity for your organization to show real leadership. While the backlash against conferences that exclude patients has been fierce, the reverse is also true … conferences that embrace patient involvement enjoy great support from a very passionate, vocal and big community!

So a potential PR disaster could still be turned around!

However…

Carolyn Thomas expressed her concern that doing so at this stage will just reinforce the tokenism aspect of including patients

Call me cynical, but in fact I now wonder if our little tempest in a teapot here is going to attract the attention of some PR types at SI who will, as so often happens in industry, decide to co-opt patient engagement by deliberating getting onboard the bandwagon in order to earn the “Patients Included” badge (which until now they’ve never even heard of!) since we have kindly brought it to their attention.

I am really interested to see how this will be addressed by the conference organizers. It demonstrates once more the rise of the patient voice – a voice that will not tolerate tokenism – and serves as a warning to all those who jump on the patient engagement bandwagon without a true commitment to its principles.

Posted in #HCSM

Harnessing the cloud of patient experience: using social media to detect poor quality healthcare

Posted on by Editor

See on Scoop.it – Health Care Social Media Monitor

Greaves, F et al. BMJ Qual Saf doi:10.1136/bmjqs-2012-001527

Marie Ennis-O’Connor‘s insight:

Abstract

Recent years have seen increasing interest in patient-centred care and calls to focus on improving the patient experience. At the same time, a growing number of patients are using the internet to describe their experiences of healthcare. We believe the increasing availability of patients’ accounts of their care on blogs, social networks, Twitter and hospital review sites presents an intriguing opportunity to advance the patient-centred care agenda and provide novel quality of care data. We describe this concept as a ‘cloud of patient experience’. In this commentary, we outline the ways in which the collection and aggregation of patients’ descriptions of their experiences on the internet could be used to detect poor clinical care. Over time, such an approach could also identify excellence and allow it to be built on. We suggest using the techniques of natural language processing and sentiment analysis to transform unstructured descriptions of patient experience on the internet into usable measures of healthcare performance. We consider the various sources of information that could be used, the limitations of the approach and discuss whether these new techniques could detect poor performance before conventional measures of healthcare quality.

See on qualitysafety.bmj.com

Posted in #HCSM

Doctors and Their Online Reputation

Posted on by Editor

See on Scoop.it – Health Care Social Media Monitor

The Internet is quickly becoming patients’ resource of choice to learn more about their doctors. But doctors have been slow to embrace it for one reason: they aren’t sure how to be a doctor online.

Marie Ennis-O’Connor‘s insight:

“The biggest risk of social media in health care,” they conclude, “is not using it at all.”

See on well.blogs.nytimes.com

Posted in #HCSM

Curation vs. Blogging: The Difference Is In The Focus

Posted on by Editor

See on Scoop.it – Health Care Social Media Monitor

Robin Good: If curation is all about finding and sharing great content, what’s the difference with what so many bloggers have been doing until now?

The difference, according to Deanna Dahlsad at Kitsch-Slapped, is in the focus. While bloggers often cover just about anything that intercepts their online wanderings, curators are characterized by a strong focus on a specific topic.  

 

Here is a key passage from her article: “Many bloggers spend their time selecting what they consider the best of what other people have created on the web and post it at their own sites, just like a magazine or newspaper.

 

Or they provide a mix of this along with writing or otherwise creating their own content. Not to split hairs, but curation involves less creation and more searching and sifting; curation’s more a matter of focused filtering than it is writing.

 

Because content curation is expected to be based on such focused filtering, it begins far more based on topic selection.

 

This is much different from blogging, where bloggers are often advised to “just begin” and let their voice and interests accumulate over time to eventually reveal a primary theme.

 

…

 

Some collectors just collect what they like as they stumble into it. …Sometimes, collectors just keep piling up stuff, no matter what it is. Even if this isn’t hoarding, it’s not-so-much of a purposeful pursuit.

 

But professional curators, those who manage collections for museums or other organizations, and serious collectors, they maintain a specific focus.

 

And rather than stumbling into items, they continually seek for specific items.

 

The definition dictates the curation — and everything from funding to their continued employment is based on how well their collection meets the collection’s definition.

 

While blogging success may be thought of in many different ways, the success of content curation lies in how well you define, search/research, and stick to your subject.”

 

Rightful. 8/10

 

Full article: http://www.kitsch-slapped.com/2012/06/facts-questions-on-blogging-curating-collecting/ ;

See on www.kitsch-slapped.com

Posted in #HCSM

Doctors 2.0™ & You » Keynote – SoloGloMoGaBi – Trends in Healthcare Social Media – Denise Silber

Posted on by Editor

See on Scoop.it – Health Care Social Media Monitor

Denise Silber outlined the current trends in social media. Along with coining the word “SoLoGloMoGaBi” to describe 6 leading trends of Social Media, Silber provided parallel examples of such innovation in Healthcare Social Media.

Marie Ennis-O’Connor‘s insight:

Main Message:

SoLoGloMoGaBi encompasses the leading facets of Healthcare Social Media: social, local, global, mobile, gamification, and big data. Social media replaces one-way conversation with information exchanges that engage people globally, 24/7. Through “serious games” and gamification, social media has the ability to catalyze behavioral change. Big Data refers to the collection of user information in  large, original databases that will further inform the creation of future social media applications.

 

See on www.doctors20.com

Posted in #HCSM

Interview with Dr. Russell Faust on Healthcare Social Media

Posted on by Editor

Russell Faust, MD, PhD is interviewed about his involvement with healthcare social media.

” HCSM is definitely NOT a passing phase! The specific platforms may come and go – after all, they are merely tools for connecting – but the act of connecting in the digital world will only grow, become more pervasive and easier in our lives. That includes our ability to access and edit our medical data, our ability to access our physicians and various experts for advice, and the ability to share anything and everything in the digital world.”

See on mdwebpro.com