Last month, in Communicate What? #CarePlanning, I declared the #CarePlanning hashtag, and told from personal experience the importance of communication in enabling participatory care. I ended with this – my perspective as the person who has the problem and the only person who is always there at the point of care:
I have goals and a plan. I monitor and communicate it. I’m the connector for my team of more than a dozen. This is person-centered #CarePlanning.
Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.
In its simplest form, communication is who, what and how. Who needs to communicate? What do they need to communicate? How will they communicate?
#CarePlanning focuses on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?
Let’s engage to better understand #CarePlanning from the point-of view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when?
Let’s also narrow our focus to #CarePlanning that can be communicated during transitions between settings rather than within settings (For example, between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency).
This time of the year is often filled with reflection and a retrospective review of our lives with a focus on lifestyle changes we hope to attain in the New Year. It’s a time where regrets can be erased by future aspirations. Many of us set resolutions, which I stopped doing years ago, but as I conducted a 2016 “life audit” (red pen and all), I recognized that I failed to practice what I preach to others daily.
When we contemplate healthy habits, we often focus on exercise and nutrition, but we often lose sight of friendships and its correlation to health and wellness. A strong connection with others can strengthen our immunity, improve our emotional and physical well-being, and help us recover from the ups and downs of life.
I want to share a family story and show how it connects to something we’ll all face, where real participatory thinking – and communication – make all the difference.
My wife and I built a house together – the whole house, everything except drilling the well. While building, living in it and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4×8 sheets of paneling and I loved real wood paneling. Turns out that we agreed. We had different images associated with paneling. Communication is a bitch in the best of circumstances.
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.
As 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.
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.
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 firstname.lastname@example.org.
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!