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Mar
14
Million-dollar Terry Pratchett
Filed Under Science, People | 3 Comments
This is an achingly wonderful speech. It comes from the other side of the healthcare divide - the person with illness that is disrupting his life, his mind and eventually his identity. This is not only about being a patient or about getting care from healthcare providers but about understand what it feels like from the human and personal perspective. Terry Pratchett gave the speech (and one million dollars) yesterday in Bristol at Alzheimer’s Research Trust Network conference.
Here is the full speech (link to pdf):
Ladies and Gentlemen. My name is Terry Pratchett, author of a series of inexplicably successful fantasy books and I have had Alzheimer’s now for the past two years plus, in which time I managed to write a couple of bestsellers. I have a rare variant. I don’t understand very much about it, but apparently if you are going to have Alzheimer’s it’s a good one to have. So, a stroke of luck there then…
Interestingly enough, when I was diagnosed last December by those nice people at Addenbrooke’s, I started a very different journey through Dementia. This one had much better scenery, interesting and often very attractive inhabitants, wonderful wildlife and many opportunities for excitement and adventure.
Those of you who’s last experience with computer games was looking at Lara Croft’s buttocks might not be aware of how good they have become as audio and visual experiences, although I would concede that Lara’s buttocks were a visual experience in their own right. But in this case I was travelling through a country that was part of the huge computer game called Oblivion, which is so beautifully detailed that I have often ridden around it to enjoy the scenery and weather and have hardly bothered to kill anything at all.
At the same time as I began exploring the wonderful Kingdom of Dementia, which is next door to the Kingdom of Mania, I was also experiencing the slightly more realistic experience of being a 59 year old who finds they have early onset Alzheimer’s. Apparently I reacted to this situation in a reasonably typical way, with a sense of loss and abandonment with an incoherent, or perhaps I should say, violently coherent fury that made the Miltonic Lucifer’s rage against Heaven seem a bit miffed by comparison. That fire still burns.
I want to go on writing! Admittedly, that means I have to stay alive. You can’t write books when you are dead, unless your name is L. Ron Hubbard. And so now I’m a game for real. It’s a nasty disease, surrounded by shadows and small, largely unseen tragedies. People don’t know what to say, unless they have had it in the family
People ask me why I announced that I had Alzheimer’s. My response was: why shouldn’t I? I remember when people died “of a long illness” now we call cancer by its name, and as every wizard knows, once you have a thing’s real name you have the first step to its taming. We are at war with cancer, and we use that
vocabulary. We battle, we are brave, we survive. And we have a large armaments industry.
For those of us with early onset in particular, it’s more of a series of skirmishes. My GP is helpful and patient, but I don’t have a specialist locally. The NHS kindly allows me to buy my own Aricept because I’m too young to have Alzheimer’s for free, a situation I’m okay with in a want-to-kick-a-politician-in-the-teeth-kind of way But, on the whole, you try to be your own doctor. The internet twangs night and day. I walk a lot and take more supplements than the Sunday papers. We talk to one another and compare regimes. Part of me lives in a world of new age remedies and science, and some of the science is a little like voodoo. But science was never an exact science, and personally I’d eat the arse out of a dead mole if it offered a fighting chance.
Fortunately, I have the Greek Chorus to calm me down
Soon after I told the world my website fell over and my PA had to spend the evening negotiating more bandwidth. I had more than 60,000 messages within the first few hours. Most of them were readers and well-wishers. Some of them wanted to sell me snake oil and I’m not necessarily going to dismiss all of these, as I have never found a rusty snake. But a large handful came from ‘experienced’ sufferers, successfully fighting a holding action, and various people in universities and research establishments who had, despite all expectations, risen to high places in their various professions even while being confirmed readers of my books. And they said; can we help? They are the Greek Chorus. Only two of them are known to each other and they give me their advice on various options that I suggest. They include a Wiccan, too. It’s a good idea to cover all the angles.
It was interesting when I asked about having my dental amalgam fillings removed. There was a chorus of “Hrumph, no scientific evidence, hrumph…., but if you can afford to have it done properly then it certainly won’t do any harm and you never know.”
And that is where I am, along with many others, scrabbling to stay ahead long enough to be there when the Cure, which I suspect may be more like a regime, comes along. Say it will be soon – There’s nearly as many of us as there are cancer sufferers, and it looks as if the number of people with the disease will double within a generation. And in most cases you will find alongside the sufferer you will find a spouse, suffering as much.
It’s a shock and a shame, then, to find out that funding for research is three per cent of that which goes to find cancer cures. Perhaps that is why, for example, that I know three people who have successfully survived brain tumours but no-one who has beaten Alzheimer’s… although among the Greek Chorus are some who are giving it a hard time.
I’d like a chance to die like my father did—of Cancer, at 86. (Remember, I’m speaking as a man with Alzheimer’s, which strips away your living self a bit at a time). Before he went to spend his last two weeks in a hospice he was bustling around the house, fixing things. He talked to us right up to the last few days, knowing who we were and who he was. Right now, I envy him. And there are thousands like me, except that they don’t get heard.
So let’s shout something loud enough to hear. We need you and you need money. I’m giving you a million dollars. Spend it wisely.
Mar
14
BarcampNYC3
Filed Under VRM, Events, People | Leave a Comment
Tomorrow I’ll be at BarCampNYC3, which will take place at Polytechnic University in Brooklyn, where I plan to do a session on VRM. And looking forward to seeing Tracy Sheridan there too.
Feb
12
Social cloud and the blue pill
Filed Under VRM, Social web, Tools and applications, Web/Tech, People | Leave a Comment
A great presentation by Kevin Marks on social cloud. The cloud is an abstraction that we create of the net. It is the perception of the network, the internet, by people who no longer see or need to think of all the piping and wires. Those are in the background, invisible to most of us.
There are several important points that Kevin makes but here’s a taster.
The younger generation doesn’t see the cloud, it experiences it as oxygen supporting their digital lives. The older generation sees this as a poisonous gas that has leaked out of their pipes, and they want to seal it up again.
Another important bit is the one about our brains and minds being the best social networking tools. Software cannot match out ability to sort out our friends and contact, establish how much we trust them and how we arrive at that trust. No software can fully map the relationships, let alone replace our natural ability to create and maintain them The implication is that therefore software should support the kind of cloud abstraction we have around the internet, also around our social relationships. You can feed it (the social networking app) relationships that are in the ’software in your head’, feed the stuff related to people in your network to software online. Users will assume that your software (this is aimed at developers) will be able to see the information that they have already fed into the software and be able to use it. (Please watch the whole thing as I hardly did full justice to Kevin’s talk.)
This skirts the edges of what I see in VRM - tools and software enabling me to take charge of my relationships by helping me with the data around them, their capture and manipulation. The cloud is abstraction of my relationships but before it recedes into the invisible strata I need to be able to breathe freely. The starting point is having healthy lungs and not having to worry about the tubes and the mechanics of breathing. And we are far from that.
At the moment, we are all connected to the matrix, with tubes still being more important than our freedom to move. The many silo-like platforms try to keep us hooked and locked in, whilst giving us enough delusion of capabilities. Alas, there is only so many times you can (super)poke or zombie someone before you start wondering what’s the point.
The point is I want to be able to hook or unhook myself at will. I want to be able to connect and create relationships without lock-ins (other than the ones that relationships bring with them naturally :-)). I don’t believe I will be able to do that unless the tools are built around me, for me and eventually by me. Blogging took off when people could set up a page and start publishing in a way previously available only to geeks with html skillz. Today I can do more things with my blog than just publish - tag, add videos, plug-in more functionality etc. with the underlying technology is invisible to me now.
I want tools and applications that will help me do that with my relationships (as social network platforms are rather inadequate for my purposes) and ultimately transactions.
One of the fundamental building blocks of VRM is the ability of individual users to take charge of their data instead of managing them via a platform and ‘trading’ that data for the functionality that the platform might provide. Once I have it in my hands, I can manage, analyse and whatever else I wish to do with them, applying various functionality directly. And share and interact with others in ways richer than platforms currently allow. It might be messier to start with but closer to human affairs in its complexity. And that is a Good Thing.
Apologies to Kevin for hijacking the cloud imagery. 
Feb
6
Sound recommendations for business
Filed Under New models, Open source/IP/DRM, Business, People | Leave a Comment
From an interview with Mitchell Baker [free registration needed], former CEO and now Chairman of Mozilla Corporation and a director of Mozilla Foundation:
The Quarterly: What can other leaders learn from the Mozilla project about running an innovative company?
Mitchell Baker: Turning people loose is really valuable. You have to figure out what space and what range, but you get a lot more than you would expect out of them, because they’re not you.
Second, figure out where you want input. There are different varieties of input and user-generated content. Figuring out what you really want is very important because you can get benefits out of any of those things. But if you’re doing one thing and sending out a message that you’re doing another, I think you’re dead.
Third, look hard at whether there are areas where you can give up some control, because the returns are great.
Feb
5
February VRM Hub meeting in London
Filed Under VRM, Admin, Events, People | Leave a Comment
The next VRM Hub meeting will be on Wednesday 27th February. The change from the usual last Thursday of the month is due to Doc Searl’s availability on that date in London.
The meetings are open with a sign-up on the VRM Hub wiki.
Dec
4
The Web is just a cute hack.
-Bob Frankston in a conversation at Internet Identity Workshop in Mountain View.
Nov
27
Work - play, play - work, even for CEOs
Filed Under New models, Business, Trends, Media, People | Leave a Comment
Tom Glocer is a CEO who’ll make it to the round.
Over the past several years, some in the British media have suggested that I should have better things to do than spend my time on Facebook or other social networking or web services. …I believe it is a very worthy investment of my “free” time to explore the latest interactions of media and technology, or indeed to write this blog when I feel I have something worthwhile to say.
Innovation is non-linear - perhaps that is why all that networked stuff works rather well. What doesn’t work is the traditional command and control but that’s another conversation. Lateral thinking is rewarded in this day and age (actually, I believe it always has been) and a good way to get cracking when thinking about new business models. So, Amazon’s ‘unique proposition’ is reader book reviews, although it makes money on selling books, eBay ’sells’ reputation, makes money on auctions, Google’s offering is reach, though it makes money on text ads. Behind every new-ish business model is lateral monetisation struggling to get out.
Growth requires innovation, and, unfortunately, innovation is not a linear process. When Columbus “discovered” the New World, he had actually set out to find a new route to India. The much admired Google similarly did not set out to invent the dominant ad monetization engine. Too much idle experimentation in the executive suite leads to a failure to execute on any plan; however, the total absence of imagination leads to plans that lead nowhere.
And now for the personal touch. Tom Glocer is spot on about the nature of expertise. Recently I noticed how people in business are starting to approach learning about social media second-hand, listening to the self-proclaimed experts* rather than jumping straight in themselves.
I believe that unless one interacts with and plays with the leading technology of the age, it is impossible to dream the big dreams, and difficult to create an environment in which creative individuals will feel at home. This does not mean that the ceo needs to program a third-party app on Facebook, but I believe it is ultimately more useful in understanding business concepts like viral marketing, crowd-sourcing or federated development to use a live example rather than wait for the Harvard Business Review article to appear in three years time.
We should all feel comfortable to follow our own paths. What counts is the results, not living-up to some outdated view of what “work” looks like in the 21st century.
Indeed. This is an area of exploration that no CEO or other executive should leave to others. If part of the job of a business leader is to see the big picture, well, there is no more distinct big picture out there than what is happening at the crossroads of the web, technology, media and human interactions within networks and outside traditional organisations and institutions.
*For the record, rather than consider myself an expert on social media or Web 2.0 or [fill in the web buzzword du jour], I’d prefer to be an ‘expert’ at shifting people’s mindset and helping them understand what is the web and what’s possible on the web.
Nov
13
On feeling stupid
Filed Under Personal, Social web, People | 2 Comments
A friend forwarded me a quote that I find particularly apt for my current state. Substitute “social media/Web2.0″ for music and current Web 2.0 buzzwords for the watchwords and good old Béla hits the nail on the head.
Recently I have felt so stupid, so dazed, so empty-headed that I have truly doubted whether I am able to write anything new anymore. All the tangled chaos that the music periodical vomit forth thick and fast about the music of today has come to weigh heavily on me: the watchwords, linear, horizontal, vertical, objective, impersonal polyphonic, homophonic, tonal, polytonal, atonal and the rest…
Well, not quite true… partly I am fed up with social media/Web 2.0 stuff bandied about all over the meedjaland, which is not a pretty sight. What with being ‘creative, ‘communicative’ and all front, the ad agency/comms crowd has mastered the lingo. Alas, ‘engagement’ in their mouth means ‘interactive campaign’ and we know what that means.. more evil Flash! And partly I have been hanging around some really clever geeks, which puts strain on any web evangelist.
So onwards in a distributed fashion.
Oct
26
VRM in London
Filed Under VRM, Autonomy, Events, People | 3 Comments
A couple of weeks ago, on October 15th there was a VRM meeting at our Chelsea HQ. The group was diverse, a CRM expert turned VRM , a marketing/branding strategist , a media analyst from the City, security gurus and uber-geeks from Google and Sun respectively, public sector & government IT expert . And me, although god knows how I would describe myself these days. Our objective was to discuss practical applications of VRM and what each of us can do. Both in business and technical terms, so the diversity of people at the meeting was deliberate.
You can read more general things about VRM here and over the next few weeks and months I will be writing more about it here. Here is William’s account of the meeting and his impressions of first encounter with VRM. The money quote:
VRM opens up all sorts of new markets as people articulate their requirements. The long tail finds its voice and states its needs. It’s counter-intuitive model, and a fundamental shift in how they do business.
Good stuff.
I want to note one issue that emerged from the discussion. When people hear about VRM, the idea that they are in control of the data is very easy to grasp and accept. In fact, it takes about 5 minutes to get that across. I note with some wonder that it is easier to explain VRM to a cab driver than to a marketing director.
Once people mentally flip the ownership of data on its head i.e. your data (purchase history, notes on products, recommendations) is owned by you, not captured and locked in inside a vendor’s silo, they see the power flowing from the control, management and sharing of information about themselves. But looking ahead and building on that ability, it is interesting that most people assume their market power will come from aggregation. Along the lines of.. if enough people want something they can get together and exert some influence over vendors. Similar to this perhaps.
I don’t think this is about aggregation. It will be a result of people’s behaviour as facilitated by VRM tools - the demand side as the sum of informed and networked individuals will have continuous impact on the supply. But I do not believe that is where we start when building VRM applications.
I am rather fond of saying ‘the network is always stronger than a node’ - so much so it appears in my email signature. But the context is that the stronger the node, the more robust and better the network. It starts from the understanding the human need for identity, ownership and a degree of autonomy or sovereignty. VRM needs to help create a framework where many tools and applications, modular or integrated, will help people to achieve just that and let the Web again work its magic.
Where this is not about pure power play is in accepting that businesses also need to be nodes in the network. We need to work with businesses that understand having customers on their side is much better than herding them into their silos for the all important, money-making Lock-In.
VRM for business then is flipping the mass customisation on its head, where it belongs. Businesses know individualisation is expensive now. And yet expected by their customers more and more as they are learning to behave and treat each other as individuals. The pressure on the industrial age mindset that sees standardisation as cost reduction is increasing. All existing processes are forcing one route, the best way to achieve efficiency is to streamline that one way. Scaling is god. Processes are the priesthood. In this context, focusing on the individual is about providing above and beyond that standard. And that can cost a lot. What we need to do is demonstrate it is not necessarily the case, when customers are genuinely part of the ‘process’. We will need both tools and change of mindset for that.
Oct
9
Confessions of a (former) control freak
Filed Under Autonomy, Social web, People | 3 Comments
David Tebbutt finds out at Creative Coffee Club meeting in London why social networks are no place for control freaks:
Inside organisations, we are all trained to prepare for meetings, to have agendas, objectives, checklists and actions. The theory is to conduct the proceedings as efficiently as possible and have a means of control if things get out of hand.
Accordingly, my thoughts about the CCC were to let people mingle for a while, then tap a glass to attract their attention and make an objectives-type announcement. My colleagues were much too polite to call me mad. They just said: “Hmmm. Not quite what we had in mind.”
Agendas and objectives for meetings are for people who don’t want to be there. If you have things you want to talk about or share, care about a project or want to connecting with others, you will have plenty to say. The crucial thing is to have the right people there - they are those who choose to be there. And we are back to autonomy…
In such gatherings a structure will emerge. There is no need to impose objectives or agendas that often represent a thinly disguised command & control attitude. The result may not be what you are used to, or imagined or would like others to conform to but something will happen alright. And most likely it will be a lot better than anything you could come up with. [Insert a respectful nod to Johnnie Moore who both preaches and practices this.]
The funny thing is that David and I used to meet in Dana Centre cafe for discussions that lasted several hours at a time and never seem to come to a natural halt. There was no structure or even an objective other than enjoyment of talking about stuff we both found interesting.
I also have a confession to make - it was the internet that has driven the futility of control freakery home for me too. Once you start blogging, interacting and communicating, there is no point in trying to make people pay attention to you, let alone force or manipulate them to do what you consider right or appropriate. And anyone, whether an individual or business will struggle with the web until realise that they should control what they can, not what they wish they could.
Oct
9
The headline says it all. Alec’s father was a character that loomed large in people’s lives and this obituary explains why. Not many a man’s name becomes part of a saying in an African language:
He spent 16 years in colonial administration in Nigeria, from 1947 to 1963, and proudly laid claim to being one of only two Britons, ever, whose surname passed into the native Hausa language. “Aka yi masa mafed” (literal translation “One did to him Muffett”) coming to mean “Justice caught up with him”.
I had the privilege of meeting the man himself. We talked of international relations, Ethiopia, WWII, history and African languages. Even in his weakened state he brought terror to the carers around him.
They don’t make them like this any more… Sorry, Alec.
Sympathy and best wishes to Alec and family.
Oct
3
Passive agressive notes
Filed Under Funny, People, Weblogs | Leave a Comment
This is brilliant! Another no-brainer use of a blog…
via Jackie
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London VRM meetings
