The next day I made a correction per Dick Morris’s comment, and toned down some of my adjectives to be more suitable outside of our private listserv. Dr. Bratton, of course we welcome dialog.
In our Society for Participatory Medicine, part of our work is to change how people think about relationships in medicine. That involves developing and spreading new ideas. And that’s what TED Talks are about – “ideas worth spreading.”
Three days ago a TEDx Talk from San Diego was posted on YouTube, titled What’s wrong with TED Talks? by Benjamin Bratton, Ph.D. (@Bratton), associate professor of visual arts at UC San Diego. It’s getting attention on social media, because Dr. Bratton’s post on his own site was cross-posted (with new prolog) on the often-viral UK site The Guardian, with the title We Need to Talk About TED.
Then yesterday, on the SPM members-only listserve, SPM co-founder Joe Graedon of Peoples Pharmacy pointed to the Guardian piece, and a robust discussion started up. My view of the subject is different from Dr. Bratton’s, and I wrote a long reply to SPM member and fellow kidney cancer patient Peggy Zuckerman. Here it is. (I only speak for myself, not for SPM, and of course we always welcome discussion.)
Read the Guardian post first, which includes the transcript of his talk, or some of this won’t make sense.
The Society for Participatory Medicine, through its founders and mission, has a strong belief in the expertise of its patient members – many of whom identify as providers or journalists or have expertise in HIT, health economics and other areas.
Patients, often through the marriage of acquired experience and the skills they bring with them into patienthood, have a vast amount of expertise. It turns out, these expert patients have already considered solutions to many of the challenges hospitals and health systems are currently tackling. The wonderful thing about these solutions is they are inherently patient-centered design. We’ll be sharing these patient-designed solutions via this site.
Go ahead and type in virtually any health or mental health condition into Google. Heck, even try a popular medication or two.
Time and time again, you’ll notice a reliable trend — 2 or 3 of the top 10 search results are nearly always going to be WebMD.
But not necessarily search results that link to WebMD.com. Instead, what you’ll find is that only one of those results goes to WebMD.com. The other one or two will go to properties that are completely owned and operated by WebMD, but have different names, looks, and layouts. And ostensibly, different content…
Let’s look at a few common examples.
As we’ve said endlessly here (and in Washington), one of the key enablers of better healthcare is access to information. For that subject there’s no more important job in the world than America’s National Coordinator for Health IT, who runs ONC (Office of the National Coordinator) with our Health & Human Services department. New Orleans health chief Dr. Karen DeSalvo was just named as new head of the ONC.
ONC is a vitally important policy arm: it’s responsible for all the regulations and programs for America’s implementation of health IT. Most famously, they’re responsible for the Meaningful Use regulations that define what physicians and hospitals must do with their systems, to get the maximum Federal incentive money (and avoid penalties). On many occasions our Society has submitted policy briefs, through Policy Chair David Harlow, and on many other occasions members of our society have testified in Washington about meaningful use.
Matthew Katz on 23andMe: “Return to Sender, Genome Unknown: Seven Reasons I Will Return My Personal Genome Kit”
Radiation oncologist Matthew Katz is a lifetime member of SPM who blogs regularly for the American Society of Clinical Oncology and Mayo Clinic Social Media Health Network. In this guest post he offers his view of 23andMe, the personal genomics service that’s in the news because of the FDA’s recent ruling.
That ruling has generated enormous controversy, on the SPM member listserv as well as in the general media. Matt’s not on the member listserv, so he didn’t know that, but he offers these views … which, as with all guest posts, are his own, not SPM’s. What do you think?
Given recent controversy about the U.S. Food and Drug Administration’s letter to the personal genome services company 23andMe, I just had to learn more about what was truly involved. After buying a kit on Thanksgiving, I’ve gone from being a skeptic to wanting a full refund for seven reasons:
My Reasons for Thanksgiving: On The Ultimate Loss of Control, Unclear Diagnoses, and Being a Patient
As we know participatory medicine is based upon mutual respect: the clinician respecting the self-knowledge, experience, and wisdom that the patient brings to the collaboration and the patient respecting the knowledge, clinical experience, wisdom, and technical skills that the clinician brings.
While most patients won’t be able to experience what it’s like to be a clinician, most (perhaps all) clinicians, at some point, will experience being a patient. As e-Patient Dave has said for years and is now published in Let Patients Help as the first of Ten Fundamental Truths:
“Patient is not a third person word…your time will come.”
Last month my time came. I wrote about my experience here.
Happy Thanksgiving to you all!
In this guest blog post, member Beatrice Tiangco describes some of the pain and suffering in the Philippines after the typhoon and expresses her gratitude for the SPM, local community and overall support. Beatrice Tiangco is a practicing Medical Oncologist from the Philippines. She is also a Clinical Epidemiologist with a special interest in Personalized Medicine and Patient Empowerment. She is a Past President of the Philippine Society of Medical Oncology and is currently Assistant Director of The Medical City Cancer Center and Head of the Section of Medical Oncology in the same hospital.
My family and I live in Manila, in the northern part of the Philippines, on the large island called Luzon, and we were not affected by the storm. The Visayas was hit hard–this group of islands lies south of Luzon, in between Luzon and the southern most huge island called Mindanao. All in all, we are 7100 islands, more during low tide :-) They say 10,000 have died, and thousands more are homeless, and sadness and desolation threatens the lives of the survivors who have lost family and property, with a slower kind of death, that caused by illness or by loss of hope.
But even storm clouds have silver linings, and we are overwhelmed with gratitude, our cups runneth over, by the overwhelming support from friends in many countries, including the United States. And these are not token rescue efforts but sincere ones from all over the world, and of course from my countrymen too. We have a local word for this spirit of community and helping each other, usually depicted by the able bodied folks carrying a neighbor’s house from one location to another (symbolizing team work), and it is “Bayanihan“. This has and continues to show through during this crisis. This is what will sustain the survivors. We have a sculpture of this in our Cancer Center, symbolizing our Team effort in caring for our patients, the house, of course, representing the patient who needs to be helped and cared for, in his time of illness and need.
I am a medical oncologist and a researcher. As a medical oncologist I do what i can to help cancer patients and guide them through their journey with their illness. As a researcher, with a background in Clinical Epidemiology, I gather and analyze data and use what I learn to try and extend the life of my patients, or at least allow them to have the best quality of life, as they define it. I believe the empowered patient makes both the practice of medicine and the search for truth (research) easier, which is why this has become my passion, especially since I joined the Society for Participatory Medicine (S4PM).
I am taking this opportunity to give feedback on how S4PM has affected me and my clinical practice in a positive way since I joined. My eyes have opened to a perspective I would otherwise not have seen (that of the patient and advocate) and I have used what I learned in concrete ways. In fact I have put Patient Empowerment as a measurable goal for our cancer center for 2014. We intend to measure it by the counting the (increase in) participation in survivorship programs, number of email queries requesting for second opinions, number of Multidisciplinary conferences requested by patients, etc. It is not always easy to change the practice of Medicine from how we learned to do it in Med School (paternalistic) to Evidence Based to Innovative to Molecular and now Personalized Medicine, but by constantly bringing back the focus on the patient, as reiterated again and again by S4PM, this task, like weathering the storm, becomes less daunting. Thank you S4PM!
Susannah Fox of Pew Research had an important new study published today about the highest cost part of the healthcare budget: patients with one or more chronic conditions. If you care about the suffering of patients with never-ending conditions or the suffering of the healthcare budget, you’ll want to study this report. Check this two minute video summary – it’s excellent:
As with all Pew Reports, though, this one is data data data, an atlas of facts, with virtually no “What can we learn from this?” interpretation. So on her personal blog she posted her summary. I heartily encourage you to go read her post including the already robust comment stream. And as always, she asks for our advice: “What would you tell someone just diagnosed with your condition to do, especially in tapping into the resources available online?“
If you have something to add there, please do. Help observers understand how this works, from the patient’s point of view.
Update Nov. 26: great news! In today’s NY Times is Gynecologists May Treat Men, Board Says in Switch! Their reason for the change is still totally doctor-centric – even the mention of patients is about “the doctor-patient relationship,” not about the patients’ best interest. But at least they were willing to change their minds. Great!
In the participatory medicine movement, patients learn to be careful, informed partners for their clinicians, and careful informed shoppers for medical services. One thing to look for is board certification. While there’s much controversy (see Bob Wachter’s blog) about the details of the process, board certification is intended to weed out docs who are seriously out of date. And that’s important to patients – more on this below.
But whose interests are top priority? The doctors’, or patients’ and families’?
There’s outrage over a new case in which a top doctor may lose her certification because she’s extending her skills beyond what her board allows. She’s a gynecologist treating men who have a problem where she’s an expert – a non-gyn problem – based on her experience treating women with the same problem.
Caution: for non-medical people, the biological facts may make you cringe. If that happens, don’t think in pictures. But do think about it as striking someone you care about.
It’s about anal cancer, the disease that killed Farah Fawcett four years ago. The disease isn’t the issue – the big question is, for whose benefit do boards certify?