Featured
happy-thanksgiving-images-free

Thanksgiving Letter to my Doctor

Coming from Romania 15 years ago, Thanksgiving was not a big thing for me. I didn’t quite grasp the holiday. My husband cooked and celebrated, and I helped and observed it in a detached way.

11 years ago, it was the Wednesday before Thanksgiving. I was 22 weeks pregnant; I was waiting for a test result. Earlier that day, I called the MFM group that ran the test, but they had left for the holiday and did not return my message. It was a big threshold for me because a few years back this test came out very bad at that point in my prior pregnancy. Back then, I did not learn about the test results for two weeks, and I ended up very sick and lost my baby.

It was almost getting dark, around 4:30 PM. I was resigned not to learn about the test result until Monday. I was still pleasantly content as I just brought over my parents from the airport. It was the first time they were visiting. I remember that moment the way we all remember where we were and what we did just before September 11.

The phone rang, and you were on the phone. You told me the test came up fine. You wished me Happy Thanksgiving and hung up. Everything changed. I had a reason for being thankful for kindness and selflessness. That’s what Thanksgiving is!

It feels like a small gesture, and I know it wasn’t. It wasn’t because it probably wasn’t just me, it was a list of worried patients that were waiting for answers. It wasn’t your responsibility; it was someone else’s test and problem. Like everyone else in the US, you probably had other things to do on Thanksgiving Eve’s afternoon, and you still took the time to make that call.

Happy Thanksgiving!

Thanks,

Ileana

 

3 Comments

 

Most Recent

A first: Participatory Medicine thinking in the Harvard Business Review

hbr-patient-engagement-clipAs kindlers and promoters of a social movement, our Society for Participatory Medicine keeps a keen eye out for signs of traction in credible places for what we’ve been advocating since 2009:

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. 

We’ve evangelized in this blog, our journal, numerous health policy meetings and hundreds of medical conferences. Our thinking has had lots of media coverage in healthcare-related publications, but this is a first: a new high-profile article in the Harvard Business Review, Giving Patients an Active Role in Their Health Care.

Here are a few quotes, including the highlights in this graphic:
read more…

2 Comments

OpenID HEART: Sharing our data gives patients power

openid-heart Venn diagramOn September 26, 2016, President Obama recognized Health IT Week by saying:

We have worked to clarify an individual’s legal right to access their health information and transmit it where they choose—whether it’s to a family member or to their smartphone. These efforts help advance our Administration’s goal of fostering the seamless and secure flow of electronic health information when and where it is needed most.

Empowered patients – e-patients – desire the ability to gather, share, and control their health data. (Gimme My DaM Data!) Currently, we find health data on paper, in people’s memories and digitally – in databases, spreadsheets, software (such as electronic medical records), in various devices, apps, or clouds.

read more…

Comment Now

NEJM Data Analysis Challenge: can others create value by seeing researchers’ data?

NEJM complexities article screen capturenejm-data-challenge-flyer-captureThis is big. Please share it with anyone you know who’s a believer in open data.


You may have heard that back in January the New England Journal of Medicine created a firestorm by saying “parasites” about people who want to see a researcher’s original data. Many (including Vice President Biden, at Health Datapalooza (video)) have objected strongly, saying that data from one project might be useful to other researchers, which could accelerate cures (as in his son Beau’s brain cancer death) and improve payback from public research funding (aka government grants).

In what I think is an amazing development, NEJM has responded by saying “Game on: we will release the entire dataset from a well known study (“SPRINT”) – let’s see if anyone else can find new value.”

You’re invited. Crunching this amount of data isn’t for the faint-hearted, but anyone can play.

The results will be presented at a conference next April, which will be live streamed.  I’ve been asked to be one of the live audience participants, so I got this email, which they’re allowing me to post publicly, to invite participation. Click the images above to download each two-page PDF.


Dear Colleague,

nejm-sprint-challenge-pageWe look forward to having you join us at the Aligning Incentives for Sharing Clinical Trial Data summit on April 3-4, 2017 in Boston, MA. While further logistical details and information will be forthcoming, in the interim, we are pleased to let you know that the SPRINT Data Analysis Challenge is now open.

To explore how the responsible sharing of clinical trial data might be used to identify additional advances in human health, NEJM is challenging individuals and groups to analyze the dataset underlying the SPRINT article published in NEJM — A Randomized Trial of Intensive versus Standard Blood-Pressure Control — and uncover a novel scientific or clinical finding. Participants with the best entries will be eligible to win a prize and present at the upcoming Aligning Incentives for Sharing Clinical Trial Data summit.

We appreciate your assistance in sharing the attached information about the SPRINT Challenge with your colleagues, post-docs, fellows, and students who have an interest in participating. There are no entry fees to submit to the SPRINT Challenge. Detailed information is available at the SPRINT Challenge website at challenge.nejm.org and questions or comments are welcome at challenge@nejm.org.

Your assistance in spreading the word is greatly appreciated.

Sincerely,

Jeffrey M. Drazen, MD
Co-Chair, SPRINT Data Analysis Challenge
Editor-in-Chief, The New England Journal of Medicine
Distinguished Parker B. Francis Professor of Medicine, Harvard Medical School
Isaac Kohane, MD, PhD
Co-Chair, SPRINT Data Analysis Challenge
Marion V. Nelson Professor, Biomedical Informatics, Harvard Medical School
Comment Now

Participatory Medicine Learning Exchange: How Are We Moving the Needle?

We are each individually advancing the participatory medicine movement in our day-to-day lives and interfaces with healthcare and/or our work. Understanding the work we are conducting within our individual silos can help us learn from one another, allow us to build upon ideas, forge collaborations, provide a forum for feedback and suggestions, and ideally avoid duplication of efforts. Helpful tips and best practices we’ve adopted as we navigate the healthcare system can also be beneficial to others.

Join us for our Inaugural Learning Exchange on Thursday, November 10th, 3:00 – 4:00pm EST. Pre-registration is required and you can sign up here. Please also spread the word, as this is open to everyone (not just SPM members)!

Agenda

Introduction & Origin of Learning Exchange- Sarah Krüg
Amplifying the ROAR of the Patient & Caregiver in Innovation, Sarah Krüg
How a Patient Became a Participatory Medicine Junkie, Nancy Finn
Research in Technology Enabled Care, Jonathan Wald, MD, MPH
Collaborating by Sharing Notes, Peter Elias, MD
Q&A

Call to Action!

Are you interested in presenting your work, best practices or tips during a future learning exchange? Not sure you want to present, but interested in sharing your work anyway so that it’s captured under the participatory medicine umbrella? Please submit here!

Comment Now

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.

read more…

2 Comments

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.

unnamed-1

‘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!

1 Comment

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.
Comment Now

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!

 

 

 

 

Comment Now

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


NYTimes 2

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.

2 Comments

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!

1 Comment