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Why We Are Losing the Battle Against Infectious Disease

map-of-infections-disease

Antibiotics and similar drugs, called antimicrobial agents, have been used successfully for the last 70 years to treat patients who have infectious diseases. However, these drugs have been used so widely and for so long, that the infectious organisms the antibiotics are designed to kill, have adapted to them, making the drugs less effective.

Antimicrobial resistance (AMR) happens when bacteria, viruses, parasites, and fungi become resistant to medications that were previously able to cure them. Common and life-threatening infections like pneumonia, gonorrhea, post-operative infections, as well as HIV/AIDS, tuberculosis and malaria, recent infectious disease such as Zika and Ebola, thus become untreatable.

Left unchecked, AMR is predicted to have significant social, health, security, and economic repercussions that will seriously undermine the and well-being of people throughout the world. Currently, AMR accounts for an estimated 50,000 deaths in the US and Europe, The Center for Disease Control ( CDC) puts the number for the US alone at 23,000.

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Imagine if You Could Cut Through the Clutter With a Health GPS

Spearheaded by Vice President Joseph Biden, the White House Cancer Moonshot Task Force was created to double the rate of progress in cancer research and treatment, striving to accelerate what could be achieved in ten years in just five. Earlier this week, Vice President Joe Biden delivered the Cancer Moonshot Report to the President and the American public in the Oval Office. The report summarizes the work of the Cancer Moonshot Task Force and lays out the Vice President’s strategic plan for transforming cancer research and care. The report also included the announcement of new commitments toward the goals of the Cancer Moonshot from both public and private sectors and CANCER101 was honored to have been recognized, among others, in this effort.

In alignment with the goals of the White House’s Cancer Moonshot Initiative to advance clinical progress, CANCER101 launched Prescription to Learn® (P2L), an interactive platform co-created with patients and caregivers to address the growing problem of information overload. P2L is the “health GPS” to curated resources and solutions to issues patients and caregivers face in navigating health information to make informed decisions. Through P2L, patients and caregivers can personalize their search for information and support, access resources aligned with learning style preference, and view resource ratings from other patients, caregivers, and clinicians.

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‘Where do I start?’ is a question we often hear from newly diagnosed patients and their families, who are inundated with a tsunami of information during a time they need to make life-altering decisions expeditiously. Prescription to Learn was co-created with patients and caregivers to guide them through information from credible sources, allow them to personalize the educational journey based on their preferences, and empower them with the information they need to alleviate fear of the unknown. With answers to their questions and facts at their fingertips, they can focus on what’s most important—their health and well-being. We are honored that our collaborative intervention was highlighted by the White House’s Cancer Moonshot Taskforce, spearheaded by Vice President Joseph Biden, and we are proud to join others in accelerating progress to end cancer as we know it.

Developed and launching in partnership with several hospitals, patient advocacy organizations and medical education providers, including University of Texas MD Anderson Cancer Center, Moffitt Cancer Center, Perlmutter Cancer Center at NYU Langone, Mayo Clinic, and the Health Collaboratory, P2L will launch in four tumor types, expand to other cancers and conditions beyond cancer in  2017, and will be integrated into medical education curriculum for clinicians nationwide, with plans to expand globally and to other disease states over time. With touch points at over 1,200 hospitals and community practices, hundreds of patient advocacy organizations, and numerous medical education providers, P2L will empower and encourage patients and their caregivers to take control over their diagnosis and partner with their healthcare team to make more informed medical decisions. P2L will continuously evolve based on needs and YOUR feedback, thus please tell us what you think!

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We’re partnering to support The Big Heist!

The Society of Participatory Medicine (SPM) is excited to announce that we’re partnering with The Big Heist to accelerate building a Health 3.0 world, where patients actively participate and are empowered to control and improve their care.

The Big Heist will be a feature film—healthcare’s The Big Short + The Daily Show + Super Size Me. It will be a satirical, follow-the-money film on the destruction caused by healthcare’s status quo… and the coming redemption. It’s a story of hope, built on the stories of those fixing it from the ground up.

We all know healthcare is broken, but most don’t know the enormous collateral damage it’s caused. From stagnant wages to public education budgets, decades of hyper-inflating healthcare costs has taken nearly every corner and group in our society. The Big Heist will make these connections in an entertaining and accessible way, then create hope by showing real-life solutions in action from around the country, across the political spectrum, and in the public and private sector.

The first stage of our partnership is to support The Big Heist’s crowd-funding campaign. They’ve created two ways to do this through a special link for anyone in the SPM ecosystem:

  • For new SPM members – Backers of this perk will receive a one year membership to SPM and a digital download of “The Big Heist” when released. SPM, which is a 501c3 non-profit organization, will receive 85% of the proceeds contributed and the remainder will go towards the film. Look for the perk with the SPM logo.
  • For anyone in the SPM ecosystem – SPM will receive 50% of the proceeds from anyone in the SPM ecosystem that backs any other crowd-fund perk.
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Last call: Vote for patient activists (and more) at Health 2.0 next week

Health2con patient finalists (click to read nominee profiles)

Click to go read the profiles of the ten nominees; to vote, see the text of this blog post

In July we invited you to vote on a large group of patient activists, to select finalists in Health 2.0 conference’s tenth annual conference:

Health 2.0: first conference to offer Patient Activist awards. Vote!

What a gathering this will be: travel expenses for the TWENTY FINALISTS are being paid by the Gordon & Betty Moore Foundation – an unprecedented move, as far as I know – real recognition of the authentic value of patient voices.

gordon-betty-moore-foundation-logoThe conference starts Sunday, so voting on the ten finalists is nearing its end.  Please go here to read about the finalists (some of whom are completely new names, to me), then go to the SurveyMonkey ballot and vote!

 

 

 

 

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e-Patient alert: “Are sites like WebMD healthful?” Dive in on NYTimes debate

Thanks to @SusanCarr, the highly patient-centered editor of Patient Safety & Quality Healthcare, for this tipoff this morning. I only have time right now to post this & run out the door. Click the image to visit the piece on the Times site, but first, consider my questions below.

NYTimes medical websites


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My initial thoughts – but I haven’t had time to read the piece yet:

  • It’s a valid question, which we’ve been talking about here for years. 
  • An inside page of the feature (see screen capture, right) asks a really wrong-headed question: “Does the internet add to patients’ knowledge or dangerously misinform them?” OR?? That’s exactly like asking whether email is fast “or” has scammers.
  • Who gets to say whether a site proved useful to the patient?
  • Why the hell were no e-patients among the sources interviewed? (See the red boxes in the top image.)

Besides, given the well documented giant cracks in the research and peer review processes, we could ask the same question about peer reviewed literature:

Does “authoritative” peer reviewed literature add to doctors’ knowledge, or dangerously misinform them? 

For compelling counterpoints, see the patient comments on our Google Mug post last December.)

Please, all, dive in, read, and comment. So many assumptions are hidden behind that headline’s question, not to mention their choice of whom to interview.

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Sips with the Society: SPM Receptions at Health 2.0 and Connected Health Summit

As the sweet days of summer 2016 start to wane, it’s time to make plans to attend key fall conferences. This year, the Society for Participatory Medicine is hosting Sips With The Society – meet and great receptions at Health 2.0 in Santa Clara and the Connected Health Symposium in Boston.

If you’re attending either event, please come on down to help spread the word about SPM. Serve as a Society spokesperson to inform about SPM and to recruit new members. If you want to attend a conference and learn about Health Care Technology and Innovation and network, see below for reduced or waived registration costs. Live nearby and not attending? Join a SIPS reception and raise your voice (and your glass) for SPM!

Health 2.0 takes place September 25 to 28 at the Santa Clara Convention Center in California. Patients 2.0, run by patients for patients, is Sunday, Sept. 25 at 2:00 pm. Join SPM Past President Sarah Krug for another great Patients 2.0 session. Patient advocates and carers can apply for free Patients 2.0 + Health 2.0 registration here. Screen Shot 2016-08-23 at 8.34.04 AM

Sips with the Society SPM Reception will be at the Santa Clara Hyatt Regency on Tuesday, Sept. 27 at 7:00 pm. Join us at the Evolution Bar off the Hyatt Lobby to meet SPM colleagues, and enjoy some drink and food. Bay Area members not attending the conference welcome! Bring prospective members! Have questions? Want to attend and share costs of lodging with a fellow SPMer?
Please contact Danny van Leeuwen (danny@health-hats.com) or Sue Woods (suewoods50@gmail.com)

Connected Health Symposium returns to Boston’s Seaport World Trade Center on October 20-21. Discount registration is available for the Connected Health Summit. Use SPMDiscount when registering. Screen Shot 2016-08-23 at 8.32.18 AM

Sips with the Society SPM Reception
will be in the Tamo Loft of the Seaport Hotel on October 20 at 7:00 pm. Greater Boston members (and non-members!) please join us for a fun networking and SPM promotion opportunity. SPM will have a table at the conference. If you have any questions or would like to help staff our Society table, please contact Sue Woods suewoods50@gmail.com.

We look forward to seeing members and members-to-be this fall, and to toast the Society!

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OpenNotes hits TEN MILLION patient level

OpenNotes healthcare IT news screen captureAs regular readers know, for years we’ve been blogging here about OpenNotes, in which patients and their designated caregivers can read every word their clinicians write, so they can be more informed. The OpenNotes tagline, “Doctors and patients on the same page,” is no joke: I was one of the subjects in the study, and I’ve blogged about visits with and without OpenNotes. With is better.

I mean, would you hold any other kind of important meeting in life with no access to the records of what happened, what was decided, and who’s going to do what??
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How can we cope with uncertainty?

Uncertainty in medicineWe’ve written often about uncertainty, which is a recurring challenge in medicine and especially in participatory medicine, where issues of relationship and decisions are core.

Some doctors have told me they were trained to display certainty even when things aren’t sure, and many patients (in my experience) want certainty about their diagnoses, or at least want their clinicians to act confidently.

But our board member Peggy Zuckerman also serves on the patient engagement committee of our “cousin” the Society to Improve Diagnosis in Medicine, and as she said on NBC last year, diagnosis ain’t always easy. And when things don’t work out well, patients can feel wronged and clinicians can be blamed.

I wonder, what if we could all accept uncertainty and cope with it together?

An article on uncertainty last month in The Skeptic discusses the reality. On Facebook our board member Peter Elias MD called it “a fine and pretty comprehensive review of how much uncertainty there is in medicine.” Here’s the first part, with some added returns for easier reading: read more…

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e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal

Sean Ahrens article in American Journal of Gastroenterology

We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else??

We’ve written before about e-patient Sean Ahrens and the Crohnology community he started.  In my view the most important post of the series was four years ago: Crossing a threshold: the e-Patient movement enters wave 2. That post linked to an article in Fast Company (a business magazine!) about Sean.

Now, could this be wave 3? We’re starting to see e-patients as authors in medical journals. That is a culture change, folks.

In this case it’s not just an opinion piece – Sean devised and conducted an experiment on himself! Here’s his Facebook post the other day on it:


So I think this is kind of big news: I just got published (in print) in a major medical journal, the American Journal of Gastroenterology (AJG)!

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Cleo Kordomenos: How My Opinion on Online Health Communities Changed

Cleo KordomenosThis is a guest blog post by Cleo Kordomenos. Cleo was my student in the New Media and Health Communication class I taught at TCNJ. More about the class is shared in this post. 

Cleo Kordomenos is a Senior Communication Studies student at The College of New Jersey with a concentration in Health Communication and a minor in Public Health. After completing her undergraduate degree, she plans to pursue a Master’s in Public Health, specializing in Health Policy and Management. Currently, she is working at the Children’s Hospital of Philadelphia doing research for CHOP’s Center for Injury Research and Prevention. Outside the classroom and the office, you can find her enjoying time with her family and friends by the beach, hiking, biking, and cooking.

I entered my New Media and Health Communication course at The College of New Jersey opposed to the idea of online health communities as means of providing patient-centered care to individuals. You would think that as a 21-year-old, growing up immersed in technology, I would welcome the idea of utilizing the internet to create online communities.

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