Health insurance comes in many forms, some more popular than others. Essentially, it’s not always the rate you pay; sometimes the sort of coverage you get, the network where your coverage applies, and other collateral benefits may be more valuable than primary ones. You’ve got to weigh the pros and cons of different options in reference to your needs.
The primary options right now are HMO and PPO plans. HMO stands for Health Maintenance Organization, and PPO stands for Preferred Provider Organization. Medicaid options are also available, there’s ACA coverage, and even a few non-traditional solutions like Medi-Share. Many of these provide similar coverage options through different avenues, but costs and health providers are of varying quality.
HMO and PPO solutions tend to be popular in part owing to the larger networks members are able to utilize. However, this design means certain individuals may have greater difficulty accessing approved medical practitioners within a given network. Such individuals have to go outside an HMO’s network to get healthcare and lose the associated cost cushion.PPOs tend to have more extensive networks, so this isn’t so much of an issue, but they’re also more expensive than HMOs in general. You can follow the hyperlink for a deeper look into what differentiates HMO and PPO plans. Essentially, HMOs are more cost-effective but have greater network limitations, PPO plans are a bit pricier, but have better networks.
Convenience Of Care Is A Big Factor In Choosing Your Provider
There are situations where one of these alternatives will be more convenient for you. Medical institutions aren’t evenly distributed across the United States, and sometimes conditions can develop which may require specialized practitioners that are far beyond your network.
The question becomes: is the cost of not having the care you’re seeking available through your network greater than the cost of the more extensive coverage? Different people will have different answers. Even so, there are ways of supplementing traditional insurance for a better overall deal.As an example, certain conditions qualify a person for government programs like Medicaid. Family and corporate associations can produce eligibility for certain medical assistance, employers may offer certain health coverage options, and alternative insurance options are out there. What some people do is balance out the down-side of one sort of medical insurance with another kind.
A Solid Balance Between Cost And Value
When you understand how each different option is designed, it will make it easier for you to find a solution which most cost-effectively represents your health needs. It’s no good paying top dollar for insurance only to find approved care is in a limited network halfway across the country. The thing is, there are a broad variety of HMO and PPO options to consider.
At the end of the day, if you’re going this route, it’ll be a little like shopping at a department store. Sure, Target has more niche goods, but Walmart is more affordable; even though they’re both in a similar range.Well, that’s the sort of difference that you’ll be looking at between two HMO or PPO providers. Only, the HMOs are traditional department stores, and PPOs are like a subscription bulk option—a Costco, or a Sam’s Club. So the PPO is sort of like the subscription department store of health insurance. You’re paying in a bit, but there’s a potential for more value.
Sam’s Club and Costco or Walmart and Target: in their categories, they offer the same things at core. In the details, they feature unique aspects of coverage. Similarly, the best way to choose between hypothetical HMO or PPO designs in health insurance would be to figure out your needs and budget, then what sort of network coverage is provided.
They may not both have the same doctors available, locally, through your network. It may be in order to ask your primary physician which network he’s involved with. Doctors can not only help you figure out which specific option would be best for your region, they may be able to appraise you of additional care options outside traditional insurance.
So finally, be sure to inform your decision from multiple angles. Advice from trusted medical practitioners, friends, and family can help. Supplement that with what you can find through blogs like this one.
I traveled to Santiago, Chile recently. My timing was auspicious, since my news-puke bingo card still had an open slot preventing me from screaming BINGO at the top of my lungs. That open square was “get tear gassed” — it got filled at around 11am Atlantic Time on Monday, October 21, as tear gas rolled down Avenida Libertador General Bernardo O’Higgins, called La Alameda by locals. It’s really hard to scream BINGO at the top of your lungs while getting tear gassed, by the way. In case you wondered.
I was in Chile to attend and speak at the annual Cochrane Colloquium, a global meeting for health researchers, science geeks, and health policy nerds from all over ever’where, to share the experience of being part of the first #PatientsIncluded Cochrane Colloquium in Edinburgh last year. The conference was scheduled to start on Tuesday, October 22.
On Thursday, October 17, Chilean citizens — who have had to put up with A LOT over the last sixty or so years — got fed up with ever increasing costs of living and took to the streets to protest a subway fare hike, led by high school students who jumped turnstiles to evade paying the new fare.
image credit: Mighty Casey Media LLC
EVADE become the mantra of the protest, which kept growing over the next couple of days, with some seriously crunchy stuff happening — a Walmart in Valparaiso got burned down, and a Santiago office tower occupied by an energy company burned, too. All of this was ramping up as I traveled from the US to Chile on Saturday into Sunday, October 19 and October 20, so when I got to Santiago on Sunday morning, there was already a curfew on tap, and a whole lot of military dudes in camo and battle gear wandering around the streets toting assault rifles.
I checked into my hotel downtown, and spent a little time looking around the neighborhood. Everything — restaurants, cafes, stores — was closed, except for a few mini-marts around the corner, which had folks lined up to buy groceries at each one. I joined one of the lines, and bought some stuff for dinner in my hotel room.
Meanwhile, my email inbox was stacking up with traffic about the coming Cochrane conference, and whether or not it was actually going to happen, given the rising tide of rage in the streets across the country. On Sunday mid-day, Cochrane decided to cancel the event, “[d]ue to the worsening situation of civil unrest across the city of Santiago.”
Which brings me to Monday, and my news-puke BINGO! moment. In a fruitless search for an ATM or casa de cambio (currency exchange) downtown, I wandered a widening circle around my hotel, winding up on La Alameda around the time that protests were set to kick off around 11am, and getting my snoutful of tear gas. I had dressed for cool-morning-then-warming weather, so I had a shirt that I’d taken off as the temperature rose on my pasear — I wrapped that around my face, and moved away from the rolling miasma of 2- chlorobenzaldene malononitrile (CS), aka tear gas.
As a former news-puke type human who has also studied history, along with living some of it directly, getting tear gassed in Chile was … kinda perfect. I grew up in a military family — US Navy, to be precise — with a dad who was not just a Top Gun (fo’ realsies) fighter pilot, but also an historian and political economist. I spent my childhood through young adulthood surrounded by history books, foreign policy journals, military briefs (declassified, of course), and at least three metropolitan dailies delivered to our door. And that was just dad — mom was Science Girl, so there was also scientific reading of all sorts available throughout the house. So of course I wound up in the news business.
My dad was always happy to talk to me about global events, and emerging history — also called “the news.” The only rule was whatever was discussed in the house, stayed in the house. His military gig, and rank, meant he had all sorts of information and knowledge. That my coming of age happened in the late 1960s through the 1970s means that he and I had all kinds of deep, crunchy conversations about everything from the Vietnam War (dad was not a fan) to Watergate (he was not a Nixon fan) to economic issues like the oil crunch (did I mention that political economy thing? He wound up with a Masters from University College, Dublin).
I learned a lot, including how to apply critical thinking, from dad. And the Jesuits — I grew up in a Catholic family, so Jesuits were always a risk — got in there, too, since they’re considered the intelligentsia of <snark font> Holy Mother Church Universal and Triumphant </snark font>, and I attended a Jesuit university.
So that’s the tear gas part — and a whole lot of backstory.
The neoliberalism
Neoliberalism is an ideology and policy model that emphasizes the value of free market competition. It first appeared as a word/concept around the turn of the 20th century, when all sorts of intellectual fist fights were going on over “communism or nah?” and “capitalism or nah?” I’m not going to go into a whole history of classical liberalism — short snort definition is “political philosophy and ideology in which primary emphasis is placed on securing the freedom of the individual by limiting the power of the government.”
Confused yet? I swear I’ll stop with the definitions now.
Neoliberalism became the very favorite thing of Milton Friedman, a University of Chicago economics guy who became the father (figuratively) of the Chicago Boys, a group of Chilean economists who wound up influencing Chilean monetary and economic policy under the Pinochet dictatorship, which was in power 1973–1990. Pinochet was a charming little despot, who led a military coup to overthrow the elected president of Chile, Salvador Allende, with the support of the Nixon Administration.
Chile became a proving ground, a laboratory, for neoliberalism as an economic and political theory put into practice. If that whole “free market competition” thing in the definition makes you think of Ronnie Reagan and Maggie Thatcher, you’re not hallucinating. They were neoliberals, dedicated to proving that free markets solve everything. Got a societal or economic problem? Free markets will solve it! Lower taxes, stop making so many rules (aka “regulations” or “laws”), just let a free market fix everything!
Which is great if you already have a little money, or even a job that pays a living wage. If you don’t have either of those — sorry, loser! “Free market” for you will mean you’ll be free to pay the market price for [whatever you need], or just do without. Neoliberalism is all about freeing up capital by lowering taxes on people with high incomes, or with big investment portfolios. If you’ve noticed that many countries, including the US, have been dealing with rising income and economic inequity, you can lay that at the door of neoliberal economic practice.
So the folks in Chile who are burning down Walmart and setting fire to energy company office towers have a point. They’re mad as hell, and they’re not going to take this <neoliberal bullshit> any more.
image credit: @UptownBerber on Twitter
As an official old, I’ve been around to see the impact of neoliberalism on global politics and global development. “Free market” thinking has mostly wound up putting what both capitalism and communism call “the means of production” — the stuff that makes the stuff that gets sold in/on the markets — in the hands of an ever-shrinking number of people and organizations. Neoliberalism, as a 20th century political philosophy, was brought into being by folks like the all-American Koch family who, after working with Stalin and Hitler in the early days of both Stalinist USSR and Nazi Germany, put their finely tuned libertarian-now-called-neoliberal political POV to work in the US.
They promoted anti-communism by buddying up with the John Birch Society, and started a “Freedom School” in Colorado Springs to promote their Ayn-Randian/rugged individualism/every man (and it’s really always men) for himself philosophy. They birthed the American hard right. If you want the whole story in almost excruciating, but very well written, detail, read “Dark Money: The Hidden History of the Billionaires Behind the Rise of the Radical Right” by Jane Mayer. Buy a bottle of bourbon to drink while you read it — you’ll thank me for suggesting that.
Back to Chile and neoliberalism. The “Chile miracle” — where Chile sported the most vibrant economy in South America — was seeded by democracy under Allende, not by Pinochet, although Pinochet kept getting the credit. Here’s a good explainer on that by Heraldo Muñoz, “Is Augusto Pinochet responsible for Chile’s success?” [spoiler: nope]
So that’s A WHOLE LOT — a mile wide and about a millimeter deep — about neoliberalism.
HTF does #PatientsIncluded come in here?
I’m SO glad you asked!
One of the reasons the folks in Chile are in the streets is that the government is trying to fully privatize the Chilean healthcare system. As an American, I can testify to what a totally shitty idea that is.
The Chilean health system underwent a drastic neoliberal reform in the 1980s, with the creation of a dual system: public and private health insurance and public and private provision of health services.
This reform served as a model for later World Bank–inspired reforms in countries like Colombia.
The private part of the Chilean health system, including private insurers and private providers, is highly inefficient and has decreased solidarity between rich and poor, sick and healthy, and young and old.
In spite of serious underfinancing during the Pinochet years, the public health component remains the backbone of the system and is responsible for the good health status of the Chilean population.
The Chilean health reform has lessons for other countries in Latin America and elsewhere: privatisation of health insurance services may not have the expected results according to neoliberal doctrine. On the contrary, it may increase unfairness in financing and inequitable access to quality care. [emphasis mine]
That I traveled to Chile to speak about #PatientsIncluded at a global health research and policy conference, as the citizens of that country said AH HELL NAH to being the policy version of a bunch of lab rats in the neoliberalism experiment, is some delicious irony. And why I actually kind of enjoyed being tear gassed on La Alameda — as an American, I know my own country is on the wrong side of “you break it, you bought it” in Chile. We broke this. So we own it. I learned that from my dad, in our long discussions of world politics over decades.
One of the chants I heard on the streets in Santiago was “no son unos 30 pesos, son unos 30 años” — “it’s not about 30 pesos, it’s about 30 years.” The ghost of Augusto Pinochet, who was finally deposed in 1990 after 17 years of torturing, disappearing, and murdering his own citizens, still haunts, perhaps even rules, in Chile in 2019. March 11, 2020 is the 30 year mark since Pinochet got drop kicked from office. Chileans are still recovering from Pinochet Syndrome, along with the rest of the world that got jiggy with neoliberalism, thinking that unrestrained free markets would be just awesome.
Participatory medicine is a core principle in #PatientsIncluded. Participatory democracy — individual participation by citizens in political decisions and policies that affect their lives, often directly rather than through elected representatives — is #CitizensIncluded. Simply putting “the grownups” — doctors, in the case of medicine; elected officials, in the case of democratic government — 100% in charge is a bad idea, since patriarchal or dictatorial bullshit can ensue.
Putting any other “grownups” — folks with lotsa money and/or power, in either medicine or civil government — in charge delivers plutocracy.
We all need to be grownups. Which is why #PatientsIncluded came into being in medicine — let patients help build systems, and policies, that work for everyone — and why participatory democracy, which sometimes comes in the form of people taking to the streets to say …
… is a hallmark of people standing up for their rights as human beings, and as citizens.
So … tear gas, neoliberalism, and #PatientsIncluded — will it blend?
It will, because all humans deserve to be provided with the basics of a dignified life, which include shelter, water, food, education, meaningful work for which they are paid a fair wage, and a voice in the circumstances of their lives, the lives of their families, and of their community.
They’ll face tear gas to tear down neoliberal bullshit, and the inequity it breeds, and demand to be included in building a world where human dignity and human rights are the prime directive.
from the collection of the Archive of the Graphic Resistance in Santiago, Chile — image credit: Mighty Casey Media LLC
In case you missed it, getting a Really Big Diagnosis like, say, cancer, is a big whack to the wallet. Even if you have titanium-plated insurance (spoiler: there is no such animal in the US healthcare payment system), there will be bills for many, many things.
If you have a deductible, be prepared to build a spreadsheet matrix with complex algebra to calculate how much of what care will be on you. If you have co-insurance – your spouse’s employer coverage, for instance – that’ll add complexity to your algebra.
It’s a lot.
In a piece on the Discover credit card and financial services blog, recent Cancer Club inductee Kris Blackmon lays out how unexpected medical expenses impact people dealing with a Really Big Diagnosis, or any ongoing health issue that requires lots of clinical care – and therefore medical bills – offering a solid strategy for dealing with those bills.
Do your research
Talk to your clinical team’s billing office in advance about what your options are under your coverage plan. You’ll have to do this with each provider and facility you’ll receive care in – Blackmon says she chose to be treated at a major academic medical center because of the one-stop care coordination available in a comprehensive care setting.
Ask all the questions
If you’ve been hanging around these parts for any length of time, you know I’m all about being your own best advocate when getting medical treatment. Kris Blackmon puts mustard on that ball by recommending that, even if you wind up in the emergency department (which can totally happen during cancer treatment), you ask to speak to the billing department rep in the ED before any treatment is ordered, or delivered, so you know what your options are, and what the bill might be for them.
Read the fine print
Yeah, yeah, “nobody reads the Terms and Conditions,” but when you’re getting medical treatment … YOU GOTTA READ ‘EM, KIDS. Reading all of each bill, and lining it up with your health plan coverage, can unearth errors and fact-check the bills you need to pay to meet your deductible. By the way, did you ask if all the clinicians delivering your care were in-network in the previous section? If not … SURPRISE! And not the fun kind with confetti and cake, the not-fun kind with you being on the hook for their charges, thanks to something called balance billing.
Think it’s just you? Nope. It’s all of us.
Social Workers and Other Organizations May Help You Manage Expenses
When I was dealing with my own Cancer Year, I not only served as my own care coordinator, I was also my own social worker – I was handed a resource sheet by my surgeon’s NP, and then worked the phones and web on my own behalf to find ways to pay the bills that were piling up, as well as the living expenses ditto. Cancer treatment is expensive, and it’s also exhausting – if you have to keep working (which I did) to keep the wheels on your life from falling off. Most hospitals and large health systems have social worker staff to help folks navigate resource options – use them!
What to do? Here’s how others managed.
There’s more!
I’ve shared the highlights of Kris Blackmon’s post on the Discover blog – read the whole thing here. Need some help? Reach out to me here. It takes a village to manage medical care – getting it AND paying for it. Happy to help if you need it.
I was recently part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors.
Here’s the full version of the conversation on YouTube, with yours truly taking the “yes” side, Brookings Institution non-resident fellow and UConn professor Niam Yaraghi taking the “no” side, and Jan Oldenburg moderating the debate. It’s an hour long, so pack a lunch!
I put together a shortened audio version of the discussion for my Healthcare Is HILARIOUS! podcast, and that’s here.
You’re invited to weigh in – share your comments here, or on Twitter or Facebook. On Twitter and Facebook, use the hashtag #fypmdata – **** You Pay Me (for my) Data.
And I’m sure there are a good number of you who are still thinking, “That’s great, but what the heck is Cochrane? And how did they get to be the ones running the ‘Hogwarts Sorting Hat’ of global medical evidence?” Forgive me, but I’m a comedy writer, and that breaks through from time to time, no matter how hard I try to stifle it. Anyway, Cochrane is named for a Scottish doctor, Archibald Leman “Archie” Cochrane, who wrote “Effectiveness and Efficiency: Random Reflections on Health Services” (the link will let you download the whole book in PDF) in 1972.
Archie Cochrane advocated for randomized clinical trials (RCTs) for, well, everything – treatments, practice methods, research protocols, an “all of the things” approach, on a loop – which was not how medicine was being practiced under the prevailing “doctor knows best” practice model in place across the globe. “The art of medicine to preserve autonomy, the science of medicine to preserve authority” rules pointed out by many people seeking to make medical science more science than “because it’s how I do things” – those rules have been snarked at by both your correspondent, and Dr. Al Mulley at Dartmouth, among a host of others.
Archie Cochrane influenced the thinking, and practice, of many other clinicians with his thought leadership on practice variation, practice standardization, and the use of RCTs to fine tune medical science. One of the people he influenced was Iain Chalmers, who, in 1993, founded the Cochrane Collaboration in Archie Cochrane’s memory. Here’s a graf from “A brief history of Cochrane”:
“The Cochrane Collaboration was founded in 1993, a year after the establishment of the UK Cochrane Centre in Oxford, UK. The UK Cochrane Centre arose from a vision to extend a ground-breaking programme of work by Iain Chalmers and colleagues in the area of pregnancy and childbirth to the rest of health care. Inspired by Archie Cochrane’s claim that “It is surely a great criticism of our profession that we have not organised a critical summary, by specialty or subspecialty, adapted periodically, of all relevant randomised controlled trials” (Cochrane 1979), Chalmers and colleagues developed the Oxford Database of Perinatal Trials and a series of systematic reviews published in Effective Care in Pregnancy and Childbirth (Chalmers 1989). The database became a regularly updated electronic publication in 1989, developed into Cochrane Pregnancy and Childbirth Database in early 1993, and formed the basis of the broader Cochrane Database of Systematic Reviews (CDSR), launched in 1995. Work on a handbook to support authors of Cochrane Reviews had begun in 1993, and the first version was published in May 1994. Over its first 20 years, Cochrane has grown from an initial group of 77 people from nine countries who met at the first Cochrane Colloquium in Oxford in 1993 to over 31,000 contributors from more than 120 countries in 2015, making it the largest organization involved in this kind of work (Allen 2006; Allen 2007; Allen 2011). Cochrane is now an internationally renowned initiative (Clarke 2005; Green 2005).”
Since 1993 – only 25 years – Cochrane has spread across the globe, with centers on every populated continent:
Cochrane Chile (hosting the Cochrane Colloquium global meeting in 2019 in Santiago)
The above list is just a sampling – and you may notice that there’s somebody missing. Yes, I’m looking at you, USA. The US did have a Cochrane Center home based at Johns Hopkins in Baltimore, but that closed in February 2018. For now, the best we’ve got is the Cochrane US West Center at Oregon Health and Science University in Portland, Oregon. But that’s a story for another blog post.
On the e-patient front, Cochrane has some terrific stuff on tap. They have a vibrant global consumer presence, via the Cochrane Consumer Network, and a ground-breaking new global citizen science project, Cochrane Crowd, where anyone can take part in the research synthesis process. The Crowd platform provides all the training anyone might need to be able to participate in assessing RCTs and studies, after completing it you’ll be ready to go, sifting through studies and trials to separate the good science from the questionable and not-reproducible stuff.
Cochrane popped up on my radar screen sometime in the last decade or so, during the time that I was scrambling to get on top of managing my parents’ care in the last few years of their lives. It came in handy as I was sifting through my decision tree during cancer treatment ten years ago, and as I’ve become more and more interested in killing off quackery and over-, under-, and mis-treatment in medicine in my work as a citizen science activist and ground-level health policy wonk. If you’re interested in the same things, join the party. We’re all in this together, and Cochrane can help us move the needle toward what I call “Goldilocks medicine” – the right treatment for the right patient, at the right time – at a faster rate.
Red Hot Chilli Pipers at the Colloquium | image credit: Simon Williams Photography
I won the big platinum #PatientsIncluded ring (much better than brass) this year with an opportunity to attend the Cochrane Colloquium, the global health science and health services research meeting that happens somewhere on Planet Earth every year. This year it was hosted by Cochrane UK, with the venue in the heart of Edinburgh, one of the best little cities in the world.
Since Cochrane UK was determined to sport the Patients Included badge, they started inviting people/patients from around the world to think about applying for a scholarship (in UK-ese, a bursary) when the starting gun fired in the spring of this year. They have a very effective Twitter presence, so I got pinged early. I volunteered to serve as an abstract reviewer, on the theory that every little bit (of contribution) helps, both for getting great content and demonstrating one’s enthusiasm for the project. When the application process opened, I was ready, and hit the “get a letter of recommendation from a Cochrane research group” daily double when Gordon Guyatt, the father of evidence based medicine in the 20th/21st centuries, and his entire MAGIC team wrote and signed my letter. THAT was a really good day around here!
When word arrived that I had been awarded a scholarship, there was also news that I’d won a couple of bonus rounds on travel assistance – one was a travel stipend from the Society for Participatory Medicine (thanks, guys!), and the other was being selected to be part of the Beyond The Room team for the conference. Here’s what that was about, directly from the Cochrane Colloquium page inviting applications:
“Also new this year is that we’re putting together a team to take the event #BeyondTheRoom. This digital conference service was started in 2016 by André Tomlin from the Mental Elf who saw an opportunity to increase the reach and impact of health events by live tweeting and podcasting from them, to involve people virtually and facilitate a much more democratic conversation. The #BeyondTheRoom team will include André and his colleague Douglas Badenoch, myself and Selena from Cochrane UK, and some new recruits – perhaps it could be you!”
Did someone say … podcast? Since I spent decades working as a broadcasting tech and producer, have produced podcasts for medical societies for the last decade, and started production on my own podcast “Healthcare Is HILARIOUS!” this year, this seemed like a dream gig. And it was. Not only was I able to fire on all cylinders when it came to my skill set, I got to do what I always loved doing while working as a journo all those years in TV news: talk to people doing really interesting stuff, and spread the word about what they’re doing.
For four days in September, my old life (net news producer) and my new life (epatient citizen scientist policy wonk storming the barricades in service of systemic shift) meshed into a perfect little machine.
Here are the pieces I produced, with links to listen and some notes on each one:
UCLA data scientists Dr. Christine Borgman and Dr. Irene Pasquetto, talking about their keynote presentation “How and why do scientists reuse others’ data to produce new knowledge? Background, Foreground, and Beyond.” This was the first interview I did, on the Saturday pre-conf day, and I felt like a total noob as I only-semi-successfully managed to ask questions that did not make me look/sound like an idiot. Reminded me how important prep reading is for us journos, and how, even with said prep reading, we can be out of our depth pretty quickly. This took me four hours to splice into something satisfactory, which was a valuable reminder/lesson that even old hand journos need to stick to the basics to stay out of the weeds when they’re doing an interview!
Dorothy Oluoch is a researcher with the KEMRI Wellcome Trust in Nairobi, Kenya. Her keynote at #CochraneForAll packed an emotional punch, sharing her experiences working with women who had newborns in the PICU, and who formed peer support networks to help each other through a tough experience.
Dr. Dalila Martínez is an epidemiologist, a health researcher, and a patient with a serious condition. She spoke about how those roles have intersected and influenced her professionally and personally in her keynote, about being a doctor caring for tuberculosis patients while dealing with the disease herself.
Dr. Victor Montori is a longtime friend of SPM and its membership, and is working globally to drive a Patient Revolutionfor more careful and kind care. His keynote centered on his message to Cochrane about what real “patients included in research” might look like.
Jennifer Johannesen gave a keynote titled “The trouble with patient and public involvement (PPI)” (PPI is called patient engagement in the US), which challenged what has become conventional wisdom on patient engagement, or PPI – that simply having patients in the room is the ne plus ultra of community involvement when it comes to including people/patients in research, priority setting, system design, policy making. Jennifer was a bit apprehensive of our interview, and pressed me hard with her perspective that too much patient engagement effort winds up being box checking, institutional back-patting bushwa (my words, not hers). Since I agree with her that most patient engagement winds up being lip service, we got it together. After tripping over my own noob-ness with the first interview I did for this project, having Jennifer come up to me at the reception that night, and thank me for putting together a piece that she felt accurately reflected her core message, made this old news producer/journo very happy.
This will be the third, and last, in my short series on attending the Cochrane Colloquium in Edinburgh in September of this year. In the first post, I talked about what that conference was like; in the second, I shared an overview of Cochrane as a global movement to make medical evidence work better for clinicians, patients, and communities around the world. This last one will talk about some of the issues Cochrane is facing, as an organization and as a proponent of science in a world that seems to have a rising suspicion of science and research.
I watched the Cochrane Colloquium open not just with a welcome to Edinburgh – although there was that, in spades – but with a behind-the-scenes PR flame war that wound up sucking up the the headline space for Cochrane that week, and in the weeks since. I talked about it in my podcast the following week, and have watched the conversation go by since my first day on the ground at the Edinburgh International Convention Center. The short-snort version of what happened is this:
On September 14, the Friday before the Cochrane Colloquium was to kick off (on Sunday the 16th), a letter went up on the Cochrane Nordic Center site’s News page from Dr. Peter Gøtzsche, wherein he announced that he had been expelled from the Cochrane governing board by a slim majority vote by that board. He cast it as a moral crisis, caused by Cochrane’s too-chummy relationship with the pharmaceutical industry. That letter has since disappeared from the Cochrane Nordic pages, the link is to a PDF on the Mad In America site.
Cochrane itself stayed silent for 24 hours, putting up its response to Gøtzsche’s letter late on Saturday, referencing only an independent review of “complaints related to the conduct of a Member” and saying that they would comment further only when the review was complete (confusing, right?).
Throughout the Colloquium, conversations went on everywhere but on the platform about this letter, the expulsion of Gøtzsche from Cochrane’s governing body, and what the reasons for same might be. There seemed to be no real detail on “reasons” beyond “behavior,” which behavior was never specifically defined.
This took over the entire agenda of the Cochrane Annual General Meeting at the Colloquium, bumping the report from the Cochrane Consumer Network, and other agenda items. Image in this post is from a Cochrane AGM attendee during the meeting.
I’m a professional communicator, so I’m amazed that Cochrane let the guy they were drop-kicking get the story out first. That’s PR 101 – s/he who gets the story out first owns the narrative. When the drop-kickee got the first announcement out, Cochrane was left in damage control mode, with neither side fleshing out any of the details regarding the “behavior” that led to the drop-kick. The social exhaust of that damage control continues to waft across the landscape. Cochrane will most certainly survive, and I hope that they learned from this series of unfortunate events. Crisis communications planning is totally a thing – a thing I recommend every organization and enterprise get savvy to.
My point? Science is as messy a business as any other human endeavor. As soon as you think you’ve got your hands, and your mind, wrapped around something … it squirrels away, and changes the entire question. Add human behavior and emotion, and stuff can flame up quickly.
Here’s my suggestion: Cochrane needs more ground-level troops – the ones called “patients,” or “citizen scientists,” or just “people” – to participate in the scientific inquiry that forms the body of their work. This is true across all scientific fields, but it’s particularly true in medical science. Human health and care is the ultimate purpose of all medical research, which means that having people/patients included in that work is critical. Much of the “science denial” hooey behind stuff like the anti-vaxx movement and the silliness that is anything Mehmet Oz says, or Gwyneth Paltrow ditto, is rooted in the giant castle walls that have separated people from Important Work In Science with paywalls, and the mindset that said “doctor knows best” when it came to medical practice. But those castle walls are being stormed on the regular since the democratization of knowledge and access to information that arrived when Tim Berners-Lee came up with the World Wide Web at CERN back in 1989.
Medical science is threaded through with uncertainty. Intuition, hypothesis, testing that hypothesis, analyzing results … lather, rinse, repeat. Getting citizen scientists and front line clinicians involved in the creation, analysis, and compilation of the science that informs how humans get and/or stay healthy is a civil/human rights issue, as well as an acceleration-of-discovery play. Paternalism can’t run the table any more. There also has to be an ongoing, robust discussion of that science: is it trustworthy, who paid for it, how much implicit bias was either included or removed, how can population-level science intersect with n-of-1 precision medicine, the 21st century medical science unicorn? Everybody in, nobody out, bring on the inevitable arguments. Scientific papers are basically arguments – don’t be afraid of conflict, from conflict can come consensus, alignment, and progress. Participatory science, it can totally be a thing.
Whither Cochrane? I think it’s up to us, the citizens of the world who care about making healthcare better for everyone. Let’s get to work.
The last time you went to the doctor, how easy was it for you to see your aftercare instructions online, or follow up on your prescriptions, or get your lab results in the online patient portal?
My guess is that it might have been easy-ish to see stuff in your doctor’s patient portal, but sharing that data from, say, your primary care MD with your ob/gyn or your rheumatologist — unless they were in the same system, in the same practice office — would have been a big NOPE. You would have done what all of us did back in the ’80s, and the ’90s, and the ’00s, and still today — you would have printed it out, or paid for a copy, and then lugged that paper with you to the other MD’s office. Where it would have been stuffed into a paper chart, and/or hand-entered into that practice’s EHR (Electronic Health Record). 20% — that’s one in five — MDs still use paper charts (as of 2016).
OK, so now you’re as up to speed as you’ll need to be for the rest of my point here — American taxpayers have shelled out major moolah to digitize medical records. When it comes to those American taxpayers’ benefits from said digitization, that’s YMMV territory, that right there.
Which makes the major moolah that the healthcare system is minting off of de-IDing and selling the data inside those records pretty infuriating. What, you say, you had no idea that was happening? Not surprising, because the healthcare system DOES. NOT. WANT. YOU. TO. KNOW., since if you did know, you might protest. Or even (gasp) ask to be cut in on that moolah.
Have you ever heard of a company called QuintilesIMS[NYSE: Q]? If not, you’re not alone. IMS Health was founded in the 1950s, and built a market for prescription data collected by their field agents in pharmacies across the US, and then the world. Quintiles was founded in the 1980s as a CRO (Contract Research Organization) recruiting for pharmaceutical clinical trials. IMS merged with Quintiles last year (2016), yielding up the new QuintilesIMS.
The company hoovers up petabytes-worth of our health record data every year — not a HIPAA violation, since this data is “de-identified” (just go Google “Latanya Sweeney” for some 411 on how effective that whole de-ID-ing thing really is) — and then sells it to the highest bidder. The revenue from those sales amounts to a significant chunk of the company’s earnings (2016 total revenue $1.953B — major moolah, indeed).
That’s
our health data
created by our interaction with our healthcare team
I think it’s long past time for all the players in this little major-moolah circle jerk to recognize just “whose data is it anyway” and start spreading the gelt. Amazon cards; points amassed for vacations or cars or furniture, o my; tuition credits; tax breaks; a partridge in a pear tree, dipped in platinum — any of those would work. Even cold, hard cash.
But first, we gotta rise up, and demand it, in chorus. There’s a rising level of noise about creating a new economy, for/by the people, based on the data created by we-the-people.
The conventional commercial doctrine is that data are proprietary to the companies that collect them. This needs to change profoundly and completely since the playing field can only be leveled by making data available to all potential competitors. One way of achieving this is to ensure data belong to the people who generate the information, i.e., to individuals who drive cars, surf the internet, and buy goods. Enforcing this principle will ensure that data can be accessed by all, but also that individuals are compensated for the activities that generate information, at the same time as receiving a strong degree of privacy protection. ~ Foreign Policy, “It’s Time to Found a New Republic” August 14, 2017
Let’s make it happen. Start the chorus. Three … two … one … SING!
I’d say we start singing in the direction of the FCC, the FTC, and our (totally not doing their jobs these days) Congressional “representatives.” And start singing out about data-brokers like QuintilesIMS.
We MUST pay attention to the man behind the curtain. ’Cause he’s holding on to ALL of the money!
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.
I 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.
Challenges
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.
Opportunities
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 was engaged in every part of the discussion over the two days, and I was 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.
Pitfalls
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?
Hopes
When 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.
In case you missed it, getting a Really Big Diagnosis like, say, cancer, is a big whack to the wallet. Even if you have titanium-plated insurance (spoiler: there is no such animal in the US healthcare payment system), there will be bills for many, many things.
Remember when 
I 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.
When 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.
