Death and Dying on LinkedIn

Has a friend or colleague who is also a contact on LinkedIn passed away? I recently attempted to follow LinkedIn directions on how to notify them about a friend's death since his profile was still active and he had died over two years ago; it was not easy. The process laid out by LinkedIn did not work - the instructions were wrong/unclear/incomplete and so I had to do this through the Help & Support system with multiple messages back and forth over two weeks. Even then, if I search for my deceased friend, here is the message I get back from the system:

I suppose that technically this is true, but this message has no meaning at all for anyone else who might be searching from my friend. In fact, I would even say that this is cruel and puts LinkedIn in a bad light. I sent a message about this plus asking about an Obituary section to the Help & Support team and this was the response:

Hi Paul,

I'm sorry for the missing part of your inquiry. Currently, the Docusign form is our official notification and process in order to identify and close a deceased member's account. You're unable to view the profile because of it having recently been closed. 

Feedback from members like you provides us with insights that identify the needs of our customers. I sent your message to our research and development team for review and consideration in future developments.

Although every idea cannot be individually responded to or implemented, please know that we do monitor suggestions quite closely for recurring themes. I'd like to invite you to follow us on Twitter http://twitter.com/linkedin or check out the LinkedIn Blog http://blog.linkedin.com for the latest notifications on site improvements. Both options are great ways to stay informed about new releases and exciting work going on behind the scenes here at LinkedIn.

Regards,

Jason

LinkedIn Trust & Safety

Notice that Jason does not address the bizarre nature of the message I received when searching. And apparently the death of members is not seen as a "recurring theme" by support. Unbelievable.

As you know if you have lost anyone, it's hard enough to notify others, but if the process to do the notification is arduous, well that just is unacceptable. I recently went through this process with a family member and I saw how a good funeral home makes the process as smooth as possible. Of course, this is their business, but really it takes people who realize that if their company is built on connections, they must, must, must be able to gracefully honor the unfortunate severing of those connections due to someone's death.

Another LinkedIn member suggested that there be an Obituary section, which I think is a fantastic idea. I'm not an actuary, but with the number of members LinkedIn has, and a recent LinkedIn blog put that number at 58 million, there has to be a non-trivial number who die each year. On Obit section would be a great way of honoring friends and colleagues. It would also be great to have a way of having colleagues notified when someone dies.

However, organizational processes are a reflection of the organizational culture and it looks to me like the culture of LinkedIn is all about growing their community and looking forward to a glorious future. But not so much about looking back or considering the messy & difficult processes involved in death and dying or even just accepting the unpleasant fact of death. It may be that it comes from the energies of the 20 & 30 year olds that make up most of the company's ranks. I never thought much about death when I was that young!

Nevertheless, Facebook has accepted that people will die and they provide a process for "memorializing" or deleting an account upon that member's death:


Memorializing the account:
It is our policy to memorialize the account of a deceased person.
In order to protect the privacy of the deceased person, we cannot provide login information for the account. However, once it has been memorialized, we take measures to secure the account.
If you need to report a timeline to be memorialized, please contact us.
Removing the account:
Verified immediate family members may request the removal of a loved one’s account from the site.

So it's really not so hard to do. I wonder how long it will take LinkedIn to come up with the same? 

Thoughts while I'm walking the dogs

Almost every day I take our two dogs, Sierra and Leone, out for a walk in our neighborhood in Lebanon, NH.  It used to be that I'd find some music on Pandora that would help me relax or focus or whatever I needed at the time but these days I just walk sans earbuds and think.

These days with President Obama reelected there are lots of things to think about.  He has a fresh outlook on how the world works that was unfortunately obscured by having to deal with a Republican Party unwilling to consider non-dogmatic approaches - by which I mean that he seems to get that our lives are surrounded by and enmeshed in all kinds of systems.  So when he proposed changes in, say, healthcare, he was  able to articulate a vision of how the reduction in the cost of healthcare, the improvement in the quality of healthcare and improvements in the economy are all connected, though again the message definitely got garbled by his willingness to consider other means of obtaining the same goal. Having said that, it is still so easy for some to focus on single issues because they don't have to think thoughts about how that issue may be affected by or may affect other issues.  People are sometimes so desperate for a single answer to their problems that they just want to hide everything else from their view. Granted, healthcare is an extremely complex and complicated system of systems and it can be difficult to see how to make headway.

This reminds me of how I was taught to solve problems in my physics and engineering training: since the real world is horrendously complicated, take away the parts that you deem to be either irrelevant or have a negligible effect on the solution to the problem.  Classic reductionism.  And sometimes in order to understand how a system of interacting components works you need to be very reductive. But you can't forgo the next step of synthesizing your new knowledge about the component all by itself with how you observe it to behave in the presence of other components. If you don't synthesize, you arrive at a solution that ignores those important interactions and you become blind to aspects of the your that don't fit.  Some people become so focused on a particular approach in science that they fail to see when throwing away the parts of the system that don't fit their solution causes their "solution" to no longer be of any real value. New solutions arise out of new frameworks and approaches that allow for these other parts of the system.

There are groups of people, for instance, that seem to believe that if we just had a flat tax that would be the answer to our problems.  There are others, the 912-ers, who fervently believe that if you just follow the 9 principles and the 12 Values everything will be solved. These are generally very black and white perspectives on the world.  Either you are with me or you are with "them".  It seems that there is this deep and desperate desire to find the One Solution and never anymore have to think or make decisions, except about whether what one is doing is being done according to the One Solution or not.

Yet in my experience there has not so far been a "One Solution" that has been able to answer all questions in a way that makes sense perfectly for all time.

Why I usually wear my headphones at work...

Someone close by was offering technical support over the phone. After my neighbor listened to the other person for a bit, she replied, "Oh, you're in the wrong universe!" All I could visualize were incorrectly labeled wormholes.

The Stunningly Narrow Definition of Fair Taxation

I ran across this article just yesterday. In it, the Union Leader of Manchester, NH, reported on the perceptions by local New Hampshirites about the fairness of the vehicle fees charged by the state. To be fair, when I first moved from Norwich, Vermont to Lebanon, New Hampshire almost six years ago, it was a shock the first time I had to pay the fee. However, as I looked at how New Hampshire's tax structure was set up it made more sense.

First, there is no income tax at all. Second there is a minimal sales tax; nothing broadly applied for all purchases but instead to meals, hotels, gasoline and liquor. In short, a set of sales taxes designed for the tourist to our state. Third, the lion's share of the tax revenue too the state at 61% comes from property taxes. And finally, we get hit pretty hard for vehicle fees.

As I read over the comments from people reacting to the article it struck me how little most people seemed to understand how we stand versus the rest of the country as far as taxation is concerned.

First, we are one of the wealthiest in this country by income and also have one of the lowest tax burdens in the country. New Hampshire is nationally ranked at or near the bottom in terms of tax burden (state and local). Whether by total taxes raised in the state (44th lowest), per capita (around 46th lowest) or as a portion of the local GDP (47th lowest). Since propert tax is the only "broad-based" tax in the state, we rank in the top 5 for property tax burden - an easy target, but if you reduce that where do you make it up? In addition, New Hampshire ranks 7th highest in the nation in median income and around the 6th lowest in total taxes.

So how come people in NH seem to complain bitterly about how little they have? It's certainly possible that the income is distributed rather unevenly throughout the state so that the proportion of one's income that has to be used to pay property taxes varies wildly. But there also seems to be a pervasive perception that almost anything the state government takes is too much.

I think it would be more productive to start the conversation with questions such as, "What do you think the state as a whole should look like? What infrastructure do we need? What services do we need? How do we make paying for all of this as equitable as possible? How do you think not paying for the upkeep of roads will affect the safety of your travel? How do we get the most value out of the taxes we pay?" From my examination of the history of this state over the last couple of decades, there seems to be more interest in finding ways of shifting costs - pretending we don't really have them by moving them out of the debit column - than in addressing them. Health care costs too much? Shift costs from employers to employees. Not that employees should not be sharing the burden, but this has not reduced the cost of health care, it has simply reduced the effective salary paid to someone by removing that cost from the overhead paid by an employer. And reducing benefits will reduce costs, but will also have an effect on the ability of the employee to pay attention to work if they are worried about their family receiving appropriate care. These are connected issues and shifting costs does not fix anything, it is simply an attempt to sweep them under a rug so that shareholders don't see them.

Knowledge Cartographer!

From the website Knowledge Cartography:

The aim of the research [on knowledge cartography] is to extend the cartographic metaphor beyond visual analogy, and to expose it as a narrative model and tool to intervene in complex, heterogeneous, dynamic realities, just like those of human geography. The map, in this context, is not only a passive representation of reality but a tool for the production of meaning. The map is thus a communication device: a mature representation artefact, aware of its own language and its own rhetoric, equipped with it its own tools, languages, techniques and supports. 


The part of this that fascinates me is that in my own attempts to understand the workings of systems that require the use of multi-level models to describe the relationships of the parts of the system to each other, I find myself creating my own internal maps to create an understandable relationship between those parts. Proximity is a measure of similarities between the parts of the system and the map is a narrative that gives the map contextual meaning. Not the narrative, of course, since another context or perspective could rearrange the parts in the map bases on another way of measuring similarities between the parts of the system. Then there are questions about how many dimensions can be represented - or rather how many dimensions have to be ignored or collapsed in order to place the visual map into a 2-D or 3-D representation. 


So if I have thought of myself as a novice knowledge engineer/explorer, now I can think of myself also as a knowledge cartographer. And I can see how this is connected to the work of Katy Börner, who has worked on the ways of visually representing scientific knowledge and who taught a half-day workshop I was privileged to attend a year or so ago.

Feedback Loops in Healthcare Research

The subtitle for this could be "Healthcare Research as if People's Health Really Mattered".

• I woke up this morning to my wife's coughing, wondering if it is "thrush" making a comeback.  Thrush is a fungal infection of her lungs that is a "side effect" of the medication she was taking during her Hep C treatment.  
• Carrie also has a suppressed immune system that is the result of the chemotherapy she received for breast cancer treatment that makes her more susceptible to colds and infections from cuts.  
• One other long-term effect (late effect) is the reduced cognitive function, again one of the "side effects" of chemotherapy.

So since I am so involved in cancer research as an informaticist I am aware of the various programs that are funded to understand and find therapies for cancer.  There are studies that are ongoing, but I wonder about the sense of urgency that is really in place.  There is such a focus on "finding the cure" for cancer that we forget the people who are "getting the cure".  What is the quality of life after such a cure?  This comes up for men and treatments for prostate cancer that leave them incontinent and with reduced sexual function.  They are thinking, "You call this a cure??  Sure, I'm alive, but I have to wear diapers and I can no longer even have, let alone enjoy, sex."  What would happen if people decided that they would rather be treated for the symptoms of the cancer with palliative care than be cured because they did not want to live with such a cure?

So I was thinking/wondering about what it is that drives our healthcare system in general terms.  Being in the US, the primary driver is really about making money.  Students go into med school and choose to be a specialist because there is more money in it.  Pharmaceutical companies invest huge sums of money into drug development because a blockbuster drug will repay the huge with vast sums of money.  The underlying theoretical framework driving these processes is the idea that the only way to really make progress -  in any field - is if commerce is in charge.

Rather than rejoice whenever a new hospital or medical research facility breaks ground we should weep and not rejoice.  It means that more money is being sunk into more "cures" and not in fixing the ones we already have.

Confusion about community and social policy

It occurs to me, after all of the right-wing rhetoric about healthcare reform, that the right-wing of the Republican Party is getting confused about what community and social policy are about.  I don't know if it's the similarity between "community" and "communism" or between "social policy" and "socialism" that gets them tripped up.  If we are to live with each other, we need to find that balance between what/need I want and what you want/need without going into a rage or killing each other.  I know that my parents raised me to deal with that boundary in a civil manner, and even to find new insights into myself and the other person from the struggle with that boundary.  That is my microcosmic take on community.

For me social policy, or laws that pertain to something other than crime and punishment or defense of the community as a whole, comes out of an awareness that there is a balance to be found between me and my community.  Taxes fund projects I may find silly or disagree with, but I have my representatives who I write to about this and try to convince of my side.  But it is a debate and not a war.  If I lose it is not my life I am losing, it is just that I was unable to sway 51% of my group - be it town or county or state or country - to my way of thinking.  If I lose, it is not the end of civilization.  I think that tax policies in my state, New Hampshire, have gone way into dysfunctional, but I am not out raging at my fellow citizen who disagrees with me about how to fix it.

Take a chill pill and some time to reflect.  Stop watching 24-hour news and following blogs and reacting immediately to every tidbit.