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TheirCharts

January 15, 2022 in Business, data, Health, Personal, problems | 9 comments

If you’re getting health care in the U.S., chances are your providers are now trying to give you a better patient experience through a website called MyChart.

This is supposed to be yours, as the first person singular pronoun My implies. Problem is, it’s TheirChart. And there are a lot of them. I have four (correction: five*) MyChart accounts with as many health care providers, so far: one in New York, two in Santa Barbara, one in Mountain View, and one in Los Angeles. I may soon have another in Bloomington, Indiana. None are mine. All are theirs, and they seem not to get along. Especially with me. (Some later correction on this below, and from readers who have weighed in. See the comments.)

Not surprisingly, all of them come from a single source: Epic Systems, the primary provider of back-end information tech to the country’s health care providers, including most of the big ones: Harvard, Yale, Mayo, UCLA, UChicago, Duke, Johns Hopkins, multiple Mount Sinais, and others like them. But, even though all these MyChart portals are provided by one company, and (I suppose) live in one cloud, there appears to be no way for you, the patient, to make those things work together inside an allied system that is truly yours (like your PC or your car is yours), or for you to provide them with data you already have from other sources. Which you could presumably do if My meant what it says.

The way they work can get perverse. For example, a couple days ago, one of my doctors’ offices called to tell me we would need to have a remote consult before she changed one of my prescriptions. This, I was told, could not be done over the phone. It would need to be done over video inside MyChart. So now we have an appointment for that meeting on Monday afternoon, using MyChart.

I decided to get ahead of that by finding my way into the right MyChart and leaving a session open in a browser tab. Then I made the mistake of starting to type “MyChart” into my browser’s location bar, and then not noticing that the top result was one of the countless other MyCharts maintained by countless other health care providers. But this other one looked so much like one of mine that I wasted an hour or more, failing to log in and then failing to recover my login credentials. It wasn’t until I called the customer service number thankfully listed on the website that I found I was trying to use the MyChart of some provider I’d never heard of—and which had never heard of me.

Now I’m looking at one of my two MyCharts for Santa Barbara, where it shows no upcoming visits. I can’t log into the other one to see if the Monday appointment is noted there, because that MyChart doesn’t know who I am. So I’m hoping to unfuck that one on Monday before the call on whichever MyChart I’ll need to use. Worst case, I’ll just tell the doctor’s office that we’ll have to make do with a phone call. If they answer the phone, that is.

The real problem here is that there seem to be hundreds or thousands of different health care providers, all using one company’s back end to provide personal health care information to millions of patients through hundreds or thousands of different portals, all called the same thing (or something close), while providing no obvious way for patients to gather their own data from multiple sources to use for their own independent purposes, both in and out of that system. Or any system.

To call this fubar understates the problem.

Here’s what matters: Epic can’t solve this. Nor can any or all of these separate health care systems. Because none of them are you.

You’re where the solution needs to happen. You need a simple and standardized way to collect and manage your own health-related information and engagements with multiple health care providers. One that’s yours.

This doesn’t mean you need to be alone in the wilderness. You do need expert help. In the old days, you used to get that through your primary care physician. But large health care operations have been hoovering up private practices for years, and one of the big reasons for that has been to make the data management side of medicine easier for physicians and their many associated providers. Not to make it easier for you. After all, you’re not their customer. Insurance companies are their customers.

In the midst of this is a market hole where your representation in the health care marketplace needs to sit. I know just one example of how that might work: the HIE of One. (HIE is Health Information Exchange.) For all our sakes, somebody please fund that work.

Far too much time, sweat, money, and blood is being spilled trying to solve this problem from the center outward. (For a few details on how awful that is, start reading here.)

While we’re probably never going to make health care in the U.S. something other than the B2B insurance business it has become, we can at least start working on a Me2B solution in the place it most needs to work: with patients. Because we’re the ones who need to be in full command of our relationships with our providers as well as with ourselves.

Health care, by the way, is just one category that cries out for solutions that can only come from the customers’ side. Customer Commons has a list of fourteen, including this one.

The first of these is identity. The self-sovereign approach to that would start with a wallet that is truly mine, and includes all these MyCharts. Hell, Epic could do one. Hint hint.

*Okay, now it’s Monday, and I’m a half-hour away from my consult with my doctor, via Zoom, inside MyChart. Turns out I was not yet registered with this MyChart, but at least there was a phone number I could call, and on the call (which my phone says took 14 minutes) we got my ass registered. He also pointed me to where, waaay down a very long menu, there is a “Link my accounts” choice, which brings up this:

Credit where due:

It was very easy to link my four known accounts, plus another (the one in Mountain View) that I had forgotten but somehow the MyChart master brain remembered. I suspect, given all the medical institutions I have encountered in my long life, that there are many more. Because in fact I had been to the Mountain View hospital only once, and I don’t even remember why, though I suppose I could check.

So that’s the good news. The bad news remains the same. None of these charts are mine. They are just views into many systems that are conditionally open to me. That they are now federated (that’s what this kind of linking-up is called) on Epic’s back end does not make it mine. It just makes it a many-theirs.

So the system still needs to be fixed. From our end.

 

 

 

 

 

Bad and dead air

December 6, 2017 in Broadcasting, california, Geography, Health, infrastructure, radio, Santa Barbara, Technology, weather | 7 comments

That was yesterday. Hard to tell from just looking at it, but that’s a 180° shot, panning from east to west across California’s South Coast, most of which is masked by smoke from the Thomas Fire.

We weren’t in the smoke then, but we are now, so there’s not much to shoot. Just something more to wear: a dust mask. Yesterday I picked up two of the few left at the nearest hardware store, and now I’m wearing one around the house. Since wildfire smoke is bad news for lungs, that seems like a good idea.

I’m also noticing dead air coming from radio stations whose transmitters have likely burned up. And websites that seem dead to the fire as well. Here’s a list of signals that I’m pretty sure is off the air right now. All their transmitters are within the Thomas Fire perimeter:

Some are on Red Mountain (on the west of Highway 33, which connects Ventura with Ojai); some are in the Ventura Hills; and some are on Sulphur Mountain, which is the high ridge on the south side of Ojai. One is on Santa Paula Mountain, with a backup on Red Mountain. (That’s KOCP. I don’t hear it, and normally do.)

In some cases I’m hearing a live signal but dead air. In others I’m hearing nothing at all. In still other cases I’m hearing something faint. And some signals are too small, directional or isolated for me to check from 30 miles (give or take) away. So, fact checking is welcome. There’s a chance some of these are on the air with lower power at temporary locations.

The links in the list above go to technical information for each station, including exact transmitter locations and facilities, rather than to the stations themselves. Here’s a short cut to those, from the great Radio-Locator.com.

Nearly all the Ventura area FM stations — KHAY, KRUZ, KFYV, KMLA, KCAQ , KMRO, KSSC and KOCP — have nothing about the fire on their websites. Kinda sad, that. I’ve only found only two local stations doing what they should be doing at times like this. One is KCLU/88.3, the public station in Thousand Oaks. KCLU also serves the South Coast with an AM and an FM signal in Santa Barbara. The other is KVTA/1590. The latter is almost inaudible here right now. I suppose that’s because of a power outage. Its transmitter, like those of the other two AM stations in town, is down in a flat area unlikely to burn.

KBBY, on Rincon Mountain (a bit west of Red Mountain, but in an evacuation area with reported spot fires), is still on the air. Its website also has no mention of the fire. Same with KHAY/100.7, on Red Mountain, which was off the air but is now back on. Likewise KMLA/103.7, licensed to El Rio but serving the Ventura area.

KXLM/102.9 which transmits from the flats, is on the air.

Other sources of fire coverage are KPCC, KCRW and KNX.

 

 

 

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Consumers can’t help health care. Customers can.

November 9, 2016 in Broadcasting, Business, Family, Friends, Health | 5 comments

stethoasclepiusEconomically speaking, the American healthcare system is not built for patients, because patients aren’t the ones paying for it directly. Insurance companies are.

See, health care in the U.S. is mostly a B2B insurance business. It is only B2C when insurance doesn’t cover expenses to the patient. And even then, insurance still pays for it when patients don’t.

The history of the U.S. health care industry is one essentially of regulatory capture by the insurance industry, which today is a vast interlocked cabal of insurance companies and kieretsus of hardware, software and service providers.

And, because this system is mostly disconnected from the controlling effects of direct accountability to patients (which we might have had if the system had been B2C), costs and inefficiencies within the system have grown out of control. To say the least of it.

It is therefore a mistake to assume that patient involvement in the system is “consumerism” in either of its common meanings: 1) acquisition of goods and services in ever-increasing amounts, or 2) The protection or promotion of the interests of consumers.

We tend to make this mistake whenever we conflate customers and consumers. We do this most commonly in businesses that offer B2C services paid for in a B2B way—as we have in the insurance business called healthcare. The split between the two is real, but treated as if it is not. Thus we have companies going on about how much they care about their consumers, users or patients, who they say have a “choice,” when in fact they have little or none.

Thus it is a mistake to assume that patients have any direct economic influence over what they get from health care providers whose primary customers are insurance companies. It really doesn’t matter is the care is provisioned through an “integrated clinical practice” (Mayo Clinic) “integrated managed care consortium” (e.g. Kaiser Permanente), “healthcare delivery system” (e.g. Cone Health), “managed healthcare group” (UnitedHealth, Anthem, Aetna), a “federation” of the same (Blue Cross Blue Shield) or a plain old “health insurance company” (Humana), the business is almost entirely upstream of the point where care is provided: inside the insurance business that gets paid to fund the whole mess.

The main exceptions in this system are Medicare and Medicaid, which are basically government-run insurance businesses.

Companies with internal splits between their customers and consumers tend to be blind to what its consumers actually want or need — or can bring to the market’s table on their own — because money comes from somewhere else. It’s conflationary shell game, making it easy to think and say the consumer is actually a customer, or like a customer, when they’re not, because all the economic action is taking place elsewhere.

I’ve seen this for decades in commercial broadcasting, and with publishers whose primary customers are advertisers rather than those who “consume” what is now called “content” (as if it were nothing more than container cargo), even if those consumers in some cases (such as with newspapers and magazines) are paying subscribers. The primary customers are still advertisers and their agents.

I’m seeing it today in the cabal of perpetrators and beneficiaries of the four dimensional shell game that online advertising has become. This is why its members, all B2B businesses, miss the clear signal “users,” “consumers” and “the audience” are sending with ad blocking and tracking protection.

The only way we can begin to fix the U.S. healthcare system is by making patients as powerful and engaging as they would be if they were full-fledged customers of the care they receive, rather than mere consumers of services. And this can only begin with better ways for each of us to take control of our own health care data (which is valuable to those services), and how it is used by services mostly paid for by others.

The best approach I have seen so far to this challenge is HIE of One, a project of two MDs, Adrian Gropper and Michael Chen. HIE stands for Health Information Exchange, which Adrian and Michael describe as “a patient-centered health record based on the FHIR and HEART interoperability standards.”

Here is the main reason I like its chances: it is based on open source code already in development. This means many developers can step in and help raise its barn, for all of us.

If you’re a developer, and you care about the health of your self, your friends and family, and the human species, I highly recommend stepping up and stepping in. I can’t think of any #VRM project with more leverage on the good of the world—as well as one country’s most essential yet fucked-up service economy.

Oil and Water on California’s South Coast

March 15, 2016 in Aviation, education, Geography, Geology, Health, history, Personal, Photography, Strange stuff, Technology, UCSB | Permalink

Oil from the Coal Oil Seep Field drifts across Platform Holly, off the shore of UC Santa Barbara.

Oil from the Coal Oil Seep Field drifts across Platform Holly, off the shore of UC Santa Barbara.

Oil in the water is one of the strange graces of life on Califonia’s South Coast.

What we see here is a long slick of oil in the Pacific, drifting across Platform Holly, which taps into the Elwood Oil Field, which is of a piece with the Coal Oil Point Seep Field, all a stone’s throw off Coal Oil Point, better known as UC Santa Barbara.

Wikipedia (at the moment) says this:

The Coal Oil Point seep field offshore from Santa Barbara, California isa petroleum seep area of about three square kilometres, adjacent to the Ellwood Oil Field, and releases about 40 tons of methane per day and about 19 tons of reactive organic gas (ethane, propane, butane and higher hydrocarbons), about twice the hydrocarbon air pollution released by all the cars and trucks in Santa Barbara County in 1990.[1]The liquid petroleum produces a slick that is many kilometres long and when degraded by evaporationand weathering, produces tar balls which wash up on the beaches for miles around.[2]

This seep also releases on the order of 100 to 150 barrels (16 to 24 m3) of liquid petroleum per day.[3] The field produces about 9 cubic meters of natural gas per barrel of petroleum.[2]

Leakage from the natural seeps near Platform Holly, the production platform for the South Ellwood Offshore oilfield, has decreased substantially, probably from the decrease in reservoir pressure due to the oil and gas produced at the platform.[2]

On the day I shot this (February 10), from a plane departing from Santa Barbara for Los Angeles, the quantity of oil in the water looked unusually high to me. But I suppose it varies from day to day.

Interesting fact:

  • Chumash canoes were made planks carved from redwood or pine logs washed ashore after storms, and sealed with asphalt tar from the seeps. There are no redwoods on the South Coast, by the way. The nearest are far up the coast at Big Sur, a couple hundred miles to the northwest. (It is likely that most of the redwood floating into the South Coast came from much farther north, where the Mendicino and Humboldt coastlines are heavily forested with redwood.)
  • National Geographic says that using the tar had the effect of shrinking the size of Chumash heads over many generations.
  • There are also few rocks hard enough to craft into a knife or an ax anywhere near Santa Barbara, or even in the Santa Ynez mountains behind it. All the local rocks are of relatively soft sedimentary kinds. Stones used for tools were mostly obtained by trade with tribes from other regions.

Here’s the whole album of oil seep shots.

What should we call the selling of our digital body parts?

August 5, 2015 in Business, Health, Ideas, Internet, marketing, problems, Technology | 12 comments

guy-in-a-shrink-wrapIn a provocative OuiShareFest talk titled You Are the Product, Aral Balkan says this:

I think we are at the point where we have to ask ourselves the very uncomfortable question: What do we call the business of selling everything else about you, that makes you who you are, apart from your physical body? And why, if this is our business, is it not regulated?

While I think regulations too often protect yesterday from last Thursday, I’m in sympathy with Aral on this one. While I’ve been working for years on simple means to signal, for example, whether or not we wish to be tracked when we leave a website, I’m not sure those signals will be respected unless backed by the force of law.

But my mind is open about it.

So there are two questions on the floor here.

  1. What do we call the unwanted harvesting of personal data (our digital body parts) online?
  2. What policies, if any, would we recommend to back the expressed wishes of people not to be followed when they are online?

Thanks in advance.

The most important event, ever

March 25, 2015 in Business, Events, Future, Health, Ideas, Identity, Internet, IoT, marketing, VRM | 1 comment

IIW XX, IIW_XX_logothe 20th Internet Identity Workshop, comes at a critical inflection point in the history of VRM: Vendor Relationship Management, the only business movement working toward giving you both

  1. independence from the silos and walled gardens of the world; and
  2. better means for engaging with every business in the world — your way, rather than theirs.

If you’re looking for a point of leverage on the future of customer liberation, independence and empowerment, IIW is it.

Wall Street-sized companies around the world are beginning to grok what Main Street ones have always known: customers aren’t just “targets” to be “acquired,” “managed,” “controlled” and “locked in.” In other words, Cluetrain was right when it said this, in 1999:

if you only have time for one clue this year, this is the one to get…

Now it is finally becoming clear that free customers are more valuable than captive ones: to themselves, to the companies they deal with, and to the marketplace.

But how, exactly? That’s what we’ll be working on at IIW, which runs from April 7 to 9 at the Computer History Museum, in the heart of Silicon Valley: the best venue ever created for a get-stuff-done unconference.

Focusing our work is a VRM maturity framework that gives every company, analyst and journalist a list of VRM competencies, and every VRM developer a context in which to show which of those competencies they provide, and how far along they are along the maturity path. This will start paving the paths along which individuals, tool and service providers and corporate systems (e.g. CRM) can finally begin to fit their pieces together. It will also help legitimize VRM as a category. If you have a VRM or related company, now is the time to jump in and participate in the conversation. Literally. Here are some of the VRM topics and technology categories that we’ll be talking about, and placing in context in the VRM maturity framework:

Note: Another version of this post appeared first on the ProjectVRM blog. I’m doing a rare cross-posting here because it that important.

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Lives of the dead

September 26, 2014 in Family, Health, history, Life, Past, Photography, Places | 3 comments

A couple weekends ago I visited the graves of relatives and ancestors on my father’s side at Woodlawn Cemetery in The Bronx. All of them died before I was born, but my Grandma Searls and her sisters often visited there, and I thought, Hey, now that I’m in New York a lot, I should visit these dead folks. Grandma would like that. Here she is at at age three, in early 1886:

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She was born Ethel Frances Englert, on November 14, 1882, the third of four sisters. Here they are with their dad, Henry Roman Englert, in 1894:

5212424474_60250bb2dc_zGrandma is the foxy one on the lower right.

They lived here, at 742 E. 142nd Street in the South Bronx:

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That row house was razed*, along with the rest of the block, to make room for what is now called “Old” Lincoln Hospital. These days an impoundment lot for towed cars reposes atop a hill formed by the imploded remains of the hospital. Amazingly, a lookup of the address on Bing Maps still goes to the same location, a century after these homes disappeared. Here’s how it looks now.

[Later…] * Big correction there! The row house may live! I found from the back of a photo that the house was on the south side of 142nd, west of Brook Avenue. Apparently the street numbering has changed since Victorian times.

While I can see some of those houses have been cleared away, Google Maps says 24 remain, starting here in this StreetView photo.

Henry was a son of Christian and Jacobina Englert, immigrants from Alsace-Lorraine, and head of the Steel & Copperplate Engraver’s Union in New York. His first wife, the four girls’ mom, was Catherine “Katie” Trainor, the daughter of Thomas Trainor, who emigrated from Letterkenny, Donegal, Ireland at age 15 in 1825, leaving six siblings behind. Thomas married Mary Ann McLaughlin of Boston, settled in New York, and made his living in the carriage trade:

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He lived and died at 228 East 122nd Street in Harlem. He and his wife Anna (née McLaughlin), married at St. Peter’s in Manhattan produced seven children, of which Katie was the second. The others were Hanna, Ella, Margaret, Mary and Charles, who was killed in the Civil War. Family legend says Chartles ran away as a teenager to fight, and was shot carrying the Union flag. But he didn’t die then. The old man visited the kid in a Washington army hospital, barely recognizing his son through the boy’s thick red beard. On Christmas 1865 the Charles arrived home in a box.

Thomas, Charles and other Trainors are among the early plantings in Old Calvary Cemetery in Queens. At three million corpses strong, Calvary is New York’s largest. I’ve never been there, and I’ll bet almost nobody else has in over a century. (One exception: Aunt Catherine Burns, about which I say more below.)

Katie’s sister Margaret, better known as “Aunt Mag,” or “Maggie,” was a favorite of the Englert girls and a source of gentle but stern family wisdom. A sample: “You’ve got it in your hand. Put it away.” Here she is:

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Maggie was the only one of the Trainor kids to live a long life, dying in 1944. Katie died at 38.

After Katie’s death, Henry married Tess Atonelle*, who had worked for the family. Here is Tess with Henry’s youngest brother, Andrew Englert:

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Tess and Henry produced a number of additional offspring, of which only one was remembered often by Grandma and her sisters: Harry, who died at age 4 in 1901:

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The next year Grandma married George W. Searls, my grandfather, who was 19 years older. George was, among other things, the head carpenter for D.W. Griffith, when Hollywood was still in Fort Leed. Here he is…

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…with his crew:

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He built the family house at 2063 Hoyt Avenue, where my father and his two sisters were born and raised, and where my parents were hanging when I was born in 1947. The two upstairs floors were mostly rented out. Among guests and tenants passing through were Mary Pickford and Lillian Gish. Grandma preferred Lillian, finding Mary’s language too salty. Another was Edward Pierson Richardson, Sr., M.D., father of Elliot Richardson (who served as Commerce Secretary under Richard Nixon).

Grandma met Grandpa when she was working as cleaning help in a boarding house, where she found Grandpa sleeping. She was so attracted to the rugged carpenter that she bent over and kissed him. He woke up, pulled her down and kissed her back. Natural selection, I guess.

Grandpa died in 1934 at age 70 after catching erysipelas from a nail that scratched his face. If they had penicillin back then he might have lasted a lot longer. I remember his older sister, Eva Quackenbush, well. She was born in 1853, lived almost to 100 (she died in 1953), and told stories about what it was like when Lincoln got shot. She was 12 at the time. Here she is with Mom and the infant me:

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I was lucky to know so many interesting characters born two centuries back, or close: stories of New York when the streets were all dirt and cobble, of the arrival of gas light, electricity, subways and trolleys, bridges and tunnels, cars and phones.

These people were living history books. Grandpa walked with a limp from a wound he got fighting in the Spanish-American War. Among many other achievements, he was foreman of the crew that built the Cyclone at Palisades Park: the scariest roller coaster in world history. Pop worked in that crew and was the first to ride it. Heres a photo he shot from the top:

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Pop was a fearless dude.

Through the Depression Pop worked as a longshoreman in New York, helped build the George Washington Bridge, served in the Coastal Artillery and went to Alaska to build railroads. That’s where he met Mom. Then he re-enlisted to fight in World War II, where his last job was as General Eisenhower’s phone operator in Paris.

All four Englert girls were still going strong the whole time I enjoyed perfect childhood summers at the beaches and in the backwoods of South Jersey. Here they are on the Jersey shore in 1953:

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They all spoke Bronx English, so the place where they stood was called ‘Da shaw.” It was also Mantoloking, not Point Pleasant. Just being historically accurate here.

What matters are the memories, which fade in life and disappear in death. I had hoped to bring some up, or to organize them in some way, when I visited Woodlawn.

It was less eerie there than blank: dead in several meanings of the word. Graves not “endowed” were marked by stones sinking into soft and hummocky glacial moraine. Who still remembers or cares about Henry Kremer (1853-1905) and his infant son, whose headstone is a few years away from burying itself? Those who cared enough to buy the stone are surely gone. How about Joseph Harper, who departed in 1897?

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Bet nobody.

I took those photos while following a map made for me by my cousin, Martin Burns, who shares the same ancestors and relatives, and who had been there before with his mother, Catherine (named after her Irish grandma, Katie), who did much of the genealogical and photo-gathering work from which my research here benefits. She died not long ago in her late 90s. (If accident or disease doesn’t get us, we’ve got a nice portfolio of genes to work with here.)

I walked around for about half an hour. During that whole time, and while driving in and out of the cemetery, I saw nobody else, other than my wife, sleeping in the car. (She said this wasn’t her idea of a fun date.) Verdant and peaceful as it is, Woodlawn is abandoned by nearly all but the dead who reside there.

The Englert inhabitants of Woodlawn are spread across three grave sites. The fourth one on Martin’s map is the Knoebel’s. They’re the family into which Aunt Gene, Grandma’s oldest sister, married. She’s the second sister from the left in the beach shot, above. There are six graves in the Knoebel plot, which is the only one of the four that I found. Thirteen people were buried there. One, Aunt Gene, went in when she died in 1960, and came out a decade later, when she was moved to Fairview Cemetery in New Jersey.

Christian and Jacobina are in an endowed plot, so their headstone stands upright. Here are aunt Catherine and cousin Kevin Burns (brother of Martin), standing behind it a few years back. There are three graves here, containing the bodies of seven people. I’ve listed them in this photo, by Martin. Four died young, and three lived full lives.

The single grave of Andrew and Annie Englert is unmarked, far as I know. (That’s Andrew next to Tess, above.) I didn’t find it. Nor did I find the grave of Henry Roman Englert, the root stock of most of the descendants I knew and heard about growing up. (I hadn’t yet posted the photos I got from Martin, so all I had to go by was a print-out of his map.)

After finding none of the Englert graves, I stood in one quiet spot and sent out a mental message to any ghosts who might be around, asking for a clue. I felt and heard nothing: clear evidence that the departed are truly gone.

Later, when I looked at these two photos, I saw that I was standing exactly on top of the graves of Henry, Katie, Harry, and several others. Here they are, in a photo Martin shot:

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Several more things weirded me out, once I looked at the affidavit Catherine got from Woodlawn (or somewhere), listing the deceased under the grass there.

First was that a fifth Englert sister, Grace, existed. She was the youngest, died at age 2, and was buried here in 1889. Obviously my aunt Grace Apgar was named after this kid. But I never heard about the late baby Grace or forgot it. Either way, it was a surprise to learn she once walked on Earth, and lies in it here.

Second was that little Harry lay beneath both his older sister, who died at 28, and his mom, Tess, who died at 63. That all died young seemed even more tragic to me. (I’m five years older than Tess was when she went. “Young” is always less than one’s own age.)

Third was that old Henry R. got the only headstone, and it was probably not one he bought for himself. I’m sure it was put up after he died, I suppose by his surviving daughters.

Yet the site was visited often, way back when, I was told. Why did nobody ever mark them all? Or those in the other plots? Was it too expensive? And how did they know where to look without a marker of any kind?

I doubt I’ll ever know. Whatever the reason, it became clear to me that cemeteries are for one or two generations of living souls, and that’s it. If the dead remember the dead, they don’t do it here on Earth. Thanks to burial vaults (coffin containers) the dead don’t even serve as fertilizer.

At any moment there are better things for the living to do than dwell on dead people that nobody alive remembers or cares about. I’m probably wasting my time and yours by visiting the subject right now.

Yet I do feel a need to put what little I know about these people in pixels on the Web, rather than just on cemetery stones. I am sure, for example, that some Englert descendants — cousins I don’t know — will some day find this post and appreciate the efforts put into this accounting, mostly by Catherine and Martin.

Harvard, founded in 1636, is likely (I hope) to keep this blog up long after I’m gone; but even Harvard won’t be around forever. Everything dies. Rock under my ass in uptown Manhattan dates was formed about a half billion years ago. In another half billion years, life on Earth will be gone: burned away by a growing Sun.

Kevin Kelly once told me that in a thousand years, evidence of nearly everyone alive today will have disappeared. It’s a good bet.

Life is for the living. So is knowledge. All I’m doing here is contributing a little bit of both to the few people who might care — and acknowledging the love and caring that flows between people within and across all generations, nearly all of which are gone or not yet here.

Since I started with Grandma, I’ll close with her gravestone, in Brookside Cemetery in Englewood, New Jersey:

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If we matter enough to be written about, our lives are framed by dates in parentheses. Grandma’s here is (1882 – When?) The answer is 1990, when she was nearly 108 years old. She is buried next to her husband George and her older daughter, Aunt Ethel M. Searls (1905-1969). Grandma’s other two kids were my father, Allen H. Searls (1908-1979), and Aunt Grace Apgar (1912-2013).

Ethel died of horrible medical treatment (including convulsive electroshock) for what was probably just depression. Though beautiful and brilliant, her love life went poorly, and she hit the glass ceiling as a regional office manager for Prudential Insurance Company — the highest position in the company held by a woman at the time.

Pop died of his fifth heart attack, all of which I am sure were caused by decades of heavy smoking. He and Mom are buried together in North Carolina. I visited Pop’s grave three times: 1) when he was planted in it; 2) with Mom on her 90th birthday; and 3) when she died a few months later. I haven’t been back since.

Grace died last December of being done. Until then she lived an active and wonderful life. You can see that in shots of her 100th birthday party, which was a gas. She lived in Maine and her body, like those of husband Archie and son Ron, was cremated, sparing us all the need to avoid visiting remains in gardens of stone where almost nobody goes — except once, when they die. Her ashes and Archie’s flank the large headstone that says SEARLS, six feet behind Grandma’s foot-stone in the photo above.

I’d like my body to be recycled. Just put it in the ground somewhere, to feed living things. These days they call that natural burial. But I’m in no rush. Too busy.

_______________

* Since Google finds approximately no families named Atonelle, and many named Antonelli (and a few named Atonelli), I suspect Atonelle is an error. So I’d welcome a correction.

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Can we at least try not to kill 440,000 patients per year?

December 4, 2013 in Business, Harvard, Health, history, Life, Personal, problems | 11 comments

Obamacare matters. But the debate about it also misdirects attention away from massive collateral damage to patients. How massive? Dig To Make Hospitals Less Deadly, a Dose of Data, by Tina Rosenberg in The New York Times. She writes,

Until very recently, health care experts believed that preventable hospital error caused some 98,000 deaths a year in the United States — a figure based on 1984 data. But a new report from the Journal of Patient Safety using updated data holds such error responsible for many more deaths — probably around some 440,000 per year. That’s one-sixth of all deaths nationally, making preventable hospital error the third leading cause of death in the United States. And 10 to 20 times that many people suffer nonlethal but serious harm as a result of hospital mistakes.

The bold-facing is mine. In 2003, one of those statistics was my mother. I too came close in 2008, though the mistake in that case wasn’t a hospital’s, but rather a consequence of incompatibility between different silo’d systems for viewing MRIs, and an ill-informed rush into a diagnostic procedure that proved unnecessary and caused pancreatitis (which happens in 5% of those performed — I happened to be that one in twenty). That event, my doctors told me, increased my long-term risk of pancreatic cancer.

Risk is the game we’re playing here: the weighing of costs and benefits, based on available information. Thus health care is primarily the risk-weighing business we call insurance. For generations, the primary customers of health care — the ones who pay for the services — have been insurance companies. Their business is selling bets on outcomes to us, to our employers, or both. They play that game, to a large extent, by knowing more than we do. Asymmetrical knowledge R them.

Now think about the data involved. Insurance companies live in a world of data. That world is getting bigger and bigger. And yet, McKinsey tells us, it’s not big enough. In The big-data revolution in US health care: Accelerating value and innovation (subtitle: Big data could transform the health-care sector, but the industry must undergo fundamental changes before stakeholders can capture its full value), McKinsey writes,

Fiscal concerns, perhaps more than any other factor, are driving the demand for big-data applications. After more than 20 years of steady increases, health-care expenses now represent 17.6 percent of GDP—nearly $600 billion more than the expected benchmark for a nation of the United States’s size and wealth.1 To discourage overutilization, many payors have shifted from fee-for-service compensation, which rewards physicians for treatment volume, to risk-sharing arrangements that prioritize outcomes. Under the new schemes, when treatments deliver the desired results, provider compensation may be less than before. Payors are also entering similar agreements with pharmaceutical companies and basing reimbursement on a drug’s ability to improve patient health. In this new environment, health-care stakeholders have greater incentives to compile and exchange information.

While health-care costs may be paramount in big data’s rise, clinical trends also play a role. Physicians have traditionally used their judgment when making treatment decisions, but in the last few years there has been a move toward evidence-based medicine, which involves systematically reviewing clinical data and making treatment decisions based on the best available information. Aggregating individual data sets into big-data algorithms often provides the most robust evidence, since nuances in subpopulations (such as the presence of patients with gluten allergies) may be so rare that they are not readily apparent in small samples.

Although the health-care industry has lagged behind sectors like retail and banking in the use of big data—partly because of concerns about patient confidentiality—it could soon catch up. First movers in the data sphere are already achieving positive results, which is prompting other stakeholders to take action, lest they be left behind. These developments are encouraging, but they also raise an important question: is the health-care industry prepared to capture big data’s full potential, or are there roadblocks that will hamper its use

The word “patient” appears nowhere in that long passage. The word “stakeholder” appears twice, plus eight more times in the whole piece. Still, McKinsey brooks some respect for the patient, though more as a metric zone than as a holder of a stake in outcomes:

Health-care stakeholders are well versed in capturing value and have developed many levers to assist with this goal. But traditional tools do not always take complete advantage of the insights that big data can provide. Unit-price discounts, for instance, are based primarily on contracting and negotiating leverage. And like most other well-established health-care value levers, they focus solely on reducing costs rather than improving patient outcomes. Although these tools will continue to play an important role, stakeholders will only benefit from big data if they take a more holistic, patient-centered approach to value, one that focuses equally on health-care spending and treatment outcomes.

McKinsey’s customers are not you and me. They are business executives, many of which work in health care. As players in their game, we have zero influence. As voters in the democracy game, however, we have a bit more. That’s one reason we elected Barack Obama.

So, viewed from the level at which it plays out, the debate over health care, at least in the U.S., is between those who believe in addressing problems with business (especially the big kind) and those who believe in addressing problems with policy (especially the big kind, such as Obamacare).

Big business has been winning, mostly. This is why Obamacare turned out to be a set of policy tweaks on a business that was already highly regulated, mostly by captive lawmakers and regulators.

Meanwhile we have this irony to contemplate: while dying of bad data at a rate rivaling war and plague, our physical bodies are being doubled into digital ones. It is now possible to know one’s entire genome, including clear markers of risks such as cancer and dementia. That’s in addition to being able to know one’s quantified self (QS), plus one’s health care history.

Yet all of that data is scattered and silo’d. This is why it is hard to integrate all our available QS data, and nearly impossible to integrate all our health care history. After I left the Harvard University Health Services (HUHS) system in 2010, my doctor at the time (Richard Donohue, MD, whom I recommend highly) obtained and handed over to me the entirety of my records from HUHS. It’s not data, however. It’s a pile of paper, as thick as the Manhattan phone book. Its utility to other doctors verges on nil. Such is the nature of the bizarre information asymmetry (and burial) in the current system.

On top of that, our health care system incentivizes us to conceal our history, especially if any of that history puts us in a higher risk category, sure to pay more in health insurance premiums.

But what happens when we solve these problems, and our digital selves become fully knowable — by both our selves and our health care providers? What happens to the risk calculation business we have today, which rationalizes more than 400,000 snuffed souls per annum as collateral damage? Do we go to single-payer then, for the simple reason that the best risk calculations are based on the nation’s entire population?

I don’t know.

I do know the current system doesn’t want to go there, on either the business or the policy side. But it will. Inevitably.

At the end of whatever day this is, our physical selves will know our data selves better than any system built to hoard and manage our personal data for their interests more than for ours. When that happens the current system will break, and another one will take its place.

How many more of us will die needlessly in the meantime? And does knowing (or guessing at) that number make any difference? It hasn’t so far.

But that shouldn’t stop us. Hats off to leadership in the direction of actually solving these problems, starting with Adrian Gropper, ePatient Dave, Patient Privacy Rights, Brian Behlendorf, Esther Dyson, John Wilbanks, Tom Munnecke and countless other good people and organizations who have been pushing this rock up a hill for a long time, and aren’t about to stop. (Send me more names or add them in the comments below.)

A new window of the sole

January 10, 2013 in Fun, Health, Life | Permalink

monofocal interocular lens“I see,” we say, when we mean “I understand.” To make something “clear” is to make it vivid and unmistakable to the mind’s eye. There are no limits to the ways sight serves as metaphor for many good and necessary things in life. The importance of vision, even for the sightless (who still use language), is beyond full accounting. As creatures we are exceptionally dependent on vision. For us upright walkers sight is, literally and figuratively, out topmost sense.

It is also through our eyes that we express ourselves and make connections with each other. That eyes are windows of the soul is so well understood, and so often said, that no one author gets credit for it.

Yet some of us are more visual than others. Me, for example. One might think me an auditory or kinesthetic type, but in fact I am a highly visual learner. That’s one reason photography is so important to me. Of the many ways I study the world, vision is foremost, and always has been.

But my vision has been less than ideal for most of my adult life. When I was a kid it was exceptional. I liked to show off my ability to read license plates at great distances. But in college, when I finally developed strong study habits, I began getting nearsighted. By the time I graduated, I needed glasses. At 40 I was past minus-2 dioptres for both eyes, which is worse than 20/150. That was when I decided that myopia, at least in my case, was adaptive, and I stopped wearing glasses as much as possible. Gradually my vision improved. In 1999, when the title photo of this blog was taken, I was down to about 1.25 dioptres, or 20/70. A decade later I passed eye tests at the DMV and no longer required corrective lenses to drive. (Though I still wore them, with only a half-dioptre or so of correction, plus about the same for a slight astigmatism. They eye charts said I was then at about 20/25 in both eyes.

My various eye doctors over the years told me reversal of myopia was likely due to cataracts in my lenses. Whether or not that was the case, my cataracts gradually got worse, especially in my right eye, and something finally needed to be done.

So yesterday the lens in my right eye was replaced. That one was, in the words of the surgeon, “mature.” Meaning not much light was getting through it. The left eye is still quite functional, and the cataract remains, for now, mild.

Cataract surgery has become a routine outpatient procedure. The prep takes about an hour, but the work itself is over in fifteen minutes, if nothing goes wrong, which it usually doesn’t. But my case was slightly unusual, because I have a condition called pseudoexfoliation syndrome, or PEX, which presents some challenges to the surgery itself.

As I understand it, PEX is dandruff of the cornea, and the flakes do various uncool things, such as clog up the accordion-like pleats of the iris, so the eye sometimes doesn’t dilate quickly or well in response to changing light levels. But the bigger risk is that these flakes sometimes weaken zonules, which are what hold the lens in place. Should those fail, the lens may drop into the back of the eye, where a far more scary and complicated procedure is required to remove it, after which normal cataract surgery becomes impossible.

In the normal version, the surgeon makes a small incision at the edge of the cornea, and then destroys and removes the old lens with through a process called phaceomulsification. He or she then inserts an intraocular lens, or IOL, like the one above. In most cases, it’s a monofocal lens. This means you no longer have the capacity to focus, so you need to choose the primary purpose you would like your new lens to support.  Most choose looking at distant things, although some choose reading or using a computer screen. Some choose to set one eye for distance and the other for close work. Either way you’ll probably end up wearing glasses for some or all purposes. I chose distance, because I like to drive and fly and look at stars and movie screens and other stuff in the world that isn’t reading-distance away.

The doctor’s office measured the dimensions of my eye and found that I wouldn’t need any special corrections in the new lens, such as for astigmatism — that in fact, my eyes, except for the lens, are ideally shaped and quite normal. It was just the lenses that looked bad. They also found no evidence of glaucoma or other conditions that sometime accompany PEX. Still, I worried about it, which turned out to be a waste, because the whole thing went perfectly. (It did take awhile to get my iris to fully dilate, but that was the only hitch.)

What’s weird about the surgery is that you’re awake and staring straight forward while they do all this. They numb the eye with topical anesthetic, and finally apply a layer of jelly. (They actually call it that. “Okay, now layer on the jelly,” the doctor says.) Thanks to intravenous drugs, I gave a smaller shit than I normally would have, but I was fully conscious the whole time. More strangely, I had the clear sense of standing there on my retina, looking up at the action as if in the Pantheon, watching the hole in its dome. I could see and hear the old lens being emulsified and sucked away, and then saw the new lens arriving like a scroll in a tube, all curled up. As the doctor put it in place, I could see the lens unfurl, and studied one of the curved hair-like springs that holds it in place. Shortly after that, the doctor pronounced the thing done. Nurses cleaned me up, taped a clear shield over my eye, and I was ready to go.

By evening the vision through that eye became clearer than through my “good” left eye. By morning everything looked crystalline. In my follow-up visit, just 24 hours after the surgery, my vision was 20/20. Then, after the doctor relieved a bit of pressure that had built up inside the cornea, it was better than that — meaning the bottom line of the eye chart was perfectly clear.

Now it’s evening of Day 2, and I continue to be amazed at how well it’s going. My fixed eye is like a new toy. It’s not perfect yet, and may never be; but it’s so much clearer than what I saw before — and still see with my left eye — that I’m constantly looking at stuff, just to see the changes.

The only nit right now is  little rays around points of light, such as stars. But the surgeon says this is due to a bit of distortion in my cornea, and that it will vanish in a week or so.

The biggest difference I notice is color. It is now obvious that I haven’t seen pure white in years. When I compare my left and right eyes, everything through my left — the one with the remaining cataract — has a sepia tint. It’s like the difference between an old LCD screen and a new LED one. As with LED screens, whites and blues are especially vivid.

Amazingly, my computer and reading glasses work well enough, since the correction for my left eye is still accurate and the one for my right one isn’t too far off. For driving I removed the right lenses from my distance glasses, since only the left eye now needs correction.

But the experience of being inside my eye watching repairs in the space of the eye alone — sticks with me. All vision is in the brain, of course, and the world we see is largely a set of descriptions we project from the portfolio of things we already know. We can see how this works when we disconnect raw sensory perception from our descriptive engines. This is what happens with LSD. As I understand it (through study and not experience, alas), LSD disconnects the world we perceive from the nouns and verbs we use to describe it. So do other hallucinogens.

So did I actually see what I thought I saw? I believe so, but I don’t know. I had studied the surgical procedure before going into it, so I knew much of what was going on. Maybe I projected it. Either way, that’s over. Now I don’t see that new lens, but rather the world of light refracting through it. That world is more interesting than my own, by a wider margin than before yesterday. It’s a gift I’m enjoying to the fullest.

Missing Michael

October 14, 2012 in Blogroll, Cluetrain, Friends, Health, Ideas, Links, News, Past, Personal | 7 comments

Uninstalled is Michael O'Connor ClarkeMichael O’Connor Clarke’s blog — a title that always creeped me out a bit, kind of the way Warren Zevon‘s My Ride’s Here did, carrying more than a hint of prophesy. Though I think Michael meant something else with it. I forget, and now it doesn’t matter because he’s gone: uninstalled yesterday. Esophogeal cancer. A bad end for a good man.

All that matters, of course, is his life. Michael was smart and funny and loving and wise far beyond his years. We bonded as blogging buddies back when most blogs were journals and not shingles of “content” built for carrying payloads of advertising. Start to finish, he was a terrific writer. Enviable, even. He always wrote for the good it did and not the money it brought. (Which, in his case, like mine and most other friends in the ‘sphere, was squat.) I’ll honor that, his memory and many good causes at once by sharing most of one of his last blog posts:

Leaky Algorithmic Marketing Efforts or Why Social Advertising Sucks

Posted on May 9, 2012

A couple of days ago, the estimable JP Rangaswami posted a piece in response to a rather weird ad he saw pop up on Facebook. You should go read the full post for the context, but here’s the really quick version.

JP had posted a quick Facebook comment about reading some very entertainingly snarky Amazon.com reviews for absurdly over-priced speaker cables.

Something lurking deep in the dark heart of the giant, steam-belching, Heath Robinson contraption that powers Facebook’s social advertising engine took a shine to JP’s drive-by comment, snarfled it up, and spat it back out again with an advert attached. A rather… odd choice of “ad inventory unit”, to say the least. Here’s how it showed up on on of JP’s friends’ Facebook news feeds:

I saw JP post about this on Facebook and commented. The more I thought about the weirdness of this, the longer my comment became – to the point where I figured it deserved to spill over into a full-blown blog rant. Strap in… you have been warned.

I’ve seen a lot of this kind of thing happening in the past several months. Recently I’ve been tweeting and Facebooking my frustration with social sharing apps that behave in similar ways. You know the kind of thing – those ridiculous cluewalls implemented by Yahoo!, SocialCam, Viddy, and several big newspapers. You see an interesting link posted by one of your friends, click to read the article, and next thing you know you’re expected to grant permission to some rotten app to start spamming all your friends every time you read something online. Ack.

The brilliant Matthew Inman, genius behind The Oatmeal, had a very smart, beautifully simple take on all this social reader stupidity.

It’s the spread of this kind of leaky algorithmic marketing that is starting to really discourage me from sharing or, sometimes, even consuming content. And I’m a sharer by nature – I’ve been willingly sharing and participating in all this social bollocks for a heck of a long time now.

But now… well, I’m really starting to worry about the path we seem to be headed down. Or should I say, the path we’re being led down.

Apps that want me to hand over the keys to my FB account before I can read the news or watch another dopey cat video just make me uncomfortable. If I inadvertently click through an interesting link only to find that SocialCam or Viddy or somesuch malarkey wants me to accept its one-sided Terms of Service, then I nope the hell out of there pretty darn fast.

How can this be good for the Web? It denies content creators of traffic and views, and ensures that I *won’t* engage with their ideas, no matter how good they might be.

All these examples are bad cases of Leaky Algorithmic Marketing Efforts (or L.A.M.E. for short). It’s a case of developers trying to be smart in applying their algorithms to user-generated content – attempting to nail the sweet spot of personal recommendations by guessing what kind of ad inventory to attach to an individual comment, status update, or tweet.

It results in unsubtle, bloody-minded marketing leaking across into personal conversations. Kinda like the loud, drunken sales rep at the cocktail party, shoe-horning a pitch for education savings plans into a discussion about your choice of school for your kids.

Perhaps I wouldn’t mind so much if it wasn’t so awfully bloody cack-handed as a marketing tactic. I mean – take another look at the ad unit served up to run alongside JP’s status update. What the hell has an ad for motorbike holidays got to do with him linking to snarky reviews of fancyass (and possibly fictional) speaker cables? Where’s the contextual connection?

Mr. Marketer: your algorithm is bad, and you should feel bad.

As you see, Michael was one of those rare people who beat the shit out of marketing from the inside. Bless him for that. It’s not a welcome calling, and Lord knows marketing needs it, now more than ever.

Here are some memorial posts from other old friends. I’ll add to the list as I spot them.

And here is his Facebook page. Much to mull and say there too. Also at a new memorial page there.

It’s good, while it lasts, that our presences persist on Facebook after we’re gone. I still visit departed friends there: Gil Templeton, Ray Simone, R.L. “Bob” Morgan, Nick Givotovsky.SupportMichaelOCC.ca is still up, and should stay up, to help provide support for his family.

His Twitter stream lives here. Last tweet: 26 September. Here’s that conversation.

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