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.
We 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 email@example.com.
Your assistance in spreading the word is greatly appreciated.
|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
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)!
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
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!
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.
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.
‘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!
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.
- 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.
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:
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.
The 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!
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.
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.)
- C’mon, Times, do you really not know about peer-to-peer healthcare, as documented by Pew Research and as practiced at places like SmartPatients.com and Inspire.com and more?
- This isn’t just an “uppity patient” complaint; in 2012 the Institute of Medicine said healthcare should be “anchored on patient needs and perspectives.” So what the hell are we doing four years later discussing this question with no patient voices??
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.
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.
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 (firstname.lastname@example.org) or Sue Woods (email@example.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.
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 firstname.lastname@example.org.
We look forward to seeing members and members-to-be this fall, and to toast the Society!
As 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.
We’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: