Archive for Participatory medicine


Human health. It’s … human.

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Originally posted on the Mighty Casey Media blog, reposted here because … well, why not?

Guess who got invited to WHO? No, really.

The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation.

WHO_signsI spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.

This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing.


There’s an old joke that asks, “What’s an elephant?” The answer: “A mouse designed by a government committee.”

That’s the risk, and challenge, to any attempt to build a definable set of standards for a human effort. Education, transportation, trade, infrastructure, communication, medicine – all require some sort of standardization to make them useful to more than one or two people huddled over a campfire. A study of history will show that as much as we humans are great idea generators, trying to get the rest of the tribe to adopt our new idea isn’t easy.

The father of quantum mechanics, Max Planck, said it best: “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” To paraphrase: Science advances one funeral at a time.

Medicine, which has been practiced for millennia by magical beings initiated into secrets of “science” that could not be understood by the common human, has only become understandable to the average Joe and/or Jane as public education has become available across the globe. Public education still isn’t available everywhere, and the character and content of that education can be complicated by cultural views of science, of the education of women, and other factors that impact access to information.

So the challenges I see here are two-fold:

  • Calcified thinking in power structures, both scientific and political.
  • Lack of science education and information access in the wider population.

That’s true in developed nations – just witness the “science denial” movement in the US that stubbornly insists on not being confused with facts on issues like climate change or human reproduction – as well as in emerging nations that are still building basic infrastructure.


Well, let’s start with who was in the WHO-room. Clinicians, policy wonks, and healthcare advocates from Uganda, India, Canada, Ecuador, Pakistan, Saudi Arabia, Belgium, Ireland, the UK, the US, Switzerland, the Netherlands, Thailand, Australia, China, and Malaysia, along with a wide array of WHO folks from their Geneva HQ as well as a robust representation of their Western Pacific Region Office (WPRO). WHO’s Envoy for Patient Safety Sir Liam Donaldson (that link is to his Twitter feed, which I highly recommend) was actively engaged in every part of the discussion over the two days, and I was deeply encouraged by his clear insights into the issues we’re all wrestling with in transforming the global healthcare system.

The story that had the biggest impact on me was the one told by Dr. Jonás Gonseth, head of Hospital de Especialidades in Guayaquil, Ecuador. His experience was one that I think spotlights the core problem: lack of trust in the care delivery system by the people that system purportedly serves. I wish I had a link to the video he shared, which clearly showed the lack of trust that the Ecuadoran people had in their healthcare system. Demonstrations outside the hospital, intercut with a number of clips that included a patient on a gurney being rolled toward the hospital door who got dumped on his head when the gurney tipped over as the dweeb hauling it couldn’t figure out how to get it over a curb … you get the picture.

Dr. Gonseth was asked (begged?) by the President of Ecuador to tackle the mess that was the Guayaquil Hospital de Especialidades. In just over two years, he’s worked what could be called miraculous change in quality improvement and patient safety, largely by advocating for community social participation in that work, and for patient empowerment. He’s transformed the culture inside the hospital, and the level of community trust in the care delivered by that hospital. The money quote: “It was such a disaster we had nothing to lose [by involving patients].”

What that story told me is that grassroots frustration with healthcare systems is a global issue, one that was made clear by all the from-the-ground presentations over the two days. That leads me to the opportunities here, which are shared by both developed and emerging countries:

  • “Start where you are. Use what you have. Do what you can.” That quote from Arthur Ashe makes it clear that any – ALL – of us can work on healthcare system transformation. So let’s get this party started.
  • Transformation does not happen from the top down. There does need to be a leader, but a successful leader will more likely come from outside the system needing the transformation.

That calcified-thinking challenge I mentioned above presents a solid opportunity to those of us on the ground, working to transform the system. Designing from the outside in is a software development approach that focuses on satisfying the needs of the end user. Healthcare systems *must* look at system transformation from that perspective: start with the people you’re serving, not with the folks running the hospital/professional society/medical association. The people being served – THE PATIENTS – are the end-user stakeholders.


There’s much inertia confronting transformation of a massive human system like healthcare delivery. It’s exhausting if you look at it as a “system,” but since it is a system, any action has to be considered in the context of what sort of dominoes – or dynamite – that action might trigger. Plus, attempts at transforming bureaucratic process lead to what I’m going to call Donaldson’s Dictum (in honor of Sir Liam Donaldson, who said it): “Ability to simplify bureaucratic complexity draws heavy fire from the bureaucrats who create that complexity.”

And then there’s the elephant in every room: the money. Whatever the economic basis is for the healthcare delivery system in question, getting quality improvement and patient safety into the budget is a daunting task. Dr. Jonás Gonseth effected his hospital transformation in Ecuador without any increase in budget, but I wonder how much heavy lifting he had to do to sell his ideas to the bureaucrats? Since he’d been asked by the country’s President to take charge and fix a major mess, that might have gotten him through the first week. But transformation at this level takes months and years, so figuring out where the money’s gon’ come from is critically important.

So, in short:

  • Is there a budget for real system transformation?
  • Is there enough political will to allow that transformation to occur?


Health_Care_is_a_Right_Not_a_PrivilegeWhen it comes to complex systems thinking, I’m a simple creature. I believe that the more complex the system you’re looking at gets, the more you have to go right down to the molecular level to regain perspective.

If you’re trying to end a disease like polio, you have to start where Jonas Salk did: with the virus itself. If you’re trying to create a healthcare system that delivers human health, you have to start with … the people who are seeking health care. June Boulger, Ireland’s National Lead for Patient and Public Involvement in Healthcare, said the overarching message of her work is “people helping people.”

When I took the mic to make a comment on Monday afternoon, I told everyone in the room to run right back to the ground level whenever they got too “system”-y in their thinking or their approach to quality improvement, delivery improvement, and/or patient safety.

Design from the outside in, begin with the end in mind, “start where you are, use what you have, do what you can,” lather, rinse, repeat.

That’s my entire philosophy of healthcare system transformation in one sentence.

Let’s get this party started.


Morcellator, begone!

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morcellator patent app image

Giant sucking sound. And cancer risk.


There’s a fresh post over on on the little-known morcellator mess. Read it, and join the “Morcellator, begone!” chorus, willya?

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What’s in a Bowl of Rice?

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This is a guest post by Patricia Dean-Escoto, a nutrition coach and consultant who learned, in her own cancer journey, the impact of food on cancer prevention – she’s got a new Android app, My Breast Cancer Advocate, that’s available in the Google Play store. 

bowl of rice imageThe other day I was visiting with a good friend of the family. She had just flown in from Nigeria for a three-week stay and had come to Delaware to stay for a while. We got on the topic of the poor in countries like Africa, the commercials you see for helping to feed them, and reality of what donated money really supplies in the way of actual meals.

My sister asked her what a dollar a day would actually do. The answer was just what you see on the TV.  A dollar would feed them a bowl of rice, maybe three times a day. This bowl of rice would not contain any vegetables, nor would it have any source of protein like beef or chicken. For that, you would need to be in the range of $3 per meal.

We see these images of starving children, eating just that, a simple bowl of rice. Unfortunately, these types of ads give you the impression that the bowl of rice you see that small child eating can save their lives.  It gives them not only nourishment, but hope.

Fast-forward to an article I came across in the New York Times while traveling to my conference in Tucson a couple of days later.  The article was about, wouldn’t you know it, rice!  But, it wasn’t one of hope, nor of nourishment.  In fact, it was just the opposite.

According to recent studies, rice, in addition to being a simple carbohydrate that easily breaks down to glucose in the bloodstream, which can have an impact on your blood sugar levels, rice seems to also be a magnet for heavy metals. It has that special gift, courtesy of the way it’s grown, to attract things like cadmium, mercury, and specifically arsenic to it. We’re talking about rice – one of the most widely consumed foods in the world (and, oh, by the way, one of my husband’s favorite things to eat).

Yet, according to new research from Consumer Reports, consuming rice, even once a day, can increase arsenic levels in the body by up to 44 percent.

Where Rice can be Found

image of foods containing riceToday, rice can be found in everything from cereal to energy bars, and even baby food. In fact, because of the recent concern about gluten and gluten intolerance, rice is also becoming one of the main substitutions in a gluten-free diet for baking your favorite waffles, cookies, and cakes.

And, for all of you who say, ‘I’ll just switch to brown rice.’ It doesn’t get any better. Surprisingly, brown rice is even worse because the metals accumulate in the bran or husk and is not washed away during the bleaching process that normally accompanies the production of white rice.

In fact, according to the New York Times article, the Department of Agriculture estimates the levels of arsenic in brown rice to be 10 times higher than what is found in white rice.

Exposure to arsenic can cause a host of aliments that include: Stomach ache, nausea and vomiting, diarrhea, muscle weakness and cramping, and skin rashes. In addition, cadmium, and its associated effects on bones, have been well documented going as far back as the late 60’s.

Naturally, all of this made me think back to my conversation with my friend and what all this rice consumption was doing to the health of so many children who everyday receive only a bowl of rice for their nourishment. Rethinking how and what would feed the world could mean limiting our exposure to these toxic metals and limiting our exposure to rice.

Many other grains can be consumed that are more nutrient dense and cause a lower impact on our blood sugar levels. These include quinoa, barley, millet and couscous, all of which are readily sold in supermarkets.

To Your Health,


Patricia Dean Escoto photoPatricia Dean-Escoto is a certified nutrition consultant and breast cancer survivor. She holds a master’s degree in education and has more than 20 years of experience working in both the field of education and healthcare. In 2006, after being diagnosed with stage 2 breast cancer, Patricia returned to school to study nutrition and completed studies at Bauman College for her certification as a nutrition consultant. Recently, she hosted a year-long radio show called Pathways to Healing on the Voice America network where she interviewed experts in the field of health and wellness. Patricia is author of ‘The Top Ten Superfoods for Preventing Breast Cancer’ and creator of the My Breast Cancer Advocate app which is designed to assist those who are newly diagnosed with or recovering from breast cancer. Her company, Pathways2healing, works exclusively with cancer patients in the area of nutrition and exercise. She lectures both locally and nationally on the topic of nutrition and cancer prevention. Connect with Patricia on Facebook, on LinkedIn, and on Twitter

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Myriad finds a myriad of ways to be total trolls

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Updated Dec. 22, 2013: adds reference to Myriad’s action on DNA data as company trade secrets

As the author of a rabble-rousing call to action, with a heavy dose of humor, on managing medical care called Cancer for Christmas, I have some street cred on both cancer and on dealing with tough personal health conversations over a Christmas standing rib roast dinner.

My hair has been on fire since I heard that Myriad Genetics had patented genes, back in the previous millennium. First, how in the pluperfect f^ck is a naturally-occurring part of the human body – microscopic or not – patentable?? Second, why is a commercial enterprise allowed to dictate scientific research at a university? If they’re funding it … maybe. If they’re trying to prevent it from moving forward? What. The. F^CK? I expect crass commercialism at Walmart. When it comes to cancer research, a primary profiteering motive should be a capital offense. Yep, off with their heads, baby.

It recently came to my attention, thanks to my buddy BraveBosom‘s tip-off …

… that the trolls at Myriad Genetics are up to newer, stinkier tricks: “helping” us make cancer a holiday centerpiece!

Hey, Myriad, here’s a tip: WE DON’T TRUST YOU. You’re trolls. Support from you? I’d sooner eat dinner with Hannibal Lecter.

If you haven’t heard of Myriad Genetics, here’s the Cliff’s Notes version:

  • Founded in Salt Lake City in 1992 by, among other names, a Nobel Prize winner in chemistry, Walter Gilbert
  • In 1997, Myriad is granted a patent on BRCA1 (one of two genes that indicate high risk of breast and ovarian cancer)
  • In 1998, Myriad is granted a patent on BRCA2 (2nd of two breast cancer risk genes)
  • BRCAnalysis, the company’s genetic test for breast cancer risk, costs $4,000 (you can get an entire genomic sequence for less than that – the Myriad test only looks at two genes!)
  • Myriad hits research institutions with cease and desist letters to prevent their research into BRCA1 and BRCA2 genes as patent infringement (it seems they think your genes are their intellectual property)
  • The Association for Molecular Pathology files suit, challenging Myriad’s BRCA1 and BRCA2 patents
  • June 13, 2013: the Supreme Court rules against Myriad, saying that human genes are not patentable
  • Myriad starts to press legal action against other genetics companies, alleging trade secrets infringement (pre-SupCo-decision story here, post-decision story here)

With me so far? OK.

Yo, MySupport360 – your “support” would cost me how much, exactly? My liver, with some fava beans? The sticker price of an Escalade? The entire contents of my 401(k)? Given your track record for bottom-lining other people’s health risks, why the French-pressed f^ck should we trust you on anything, much less guiding health-related conversations with our families?

Your invitation to “talk about genetic testing” with our families over Christmas dinner … hell, we’d HAVE to serve up a bottomless flagon of nice Chianti to get through it, given that the “talk” (following your paradigm) would wind up with us wanting to clap a restraint mask on the faces of everyone behind MySupport360. ‘Cause sure as shootin’ you’d be picking our pockets all the way.

How much more powerful it would be if you followed the rising call for open science, backed by notable minds from 2012 ISEF Prize winner Jack Andraka to 2013 Nobel Prize in medicine winner Randy Schekman.

So get off your Scrooge train for Christmas, will ya? You low-down, dirty, rotten trolls.

cheezburger scrooge image

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“How much is that?” is a critical question in healthcare

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This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices.

Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.

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