I’m moving away from The Amateur Book Blogger banner, and will be posting simply as me, as I go on. The start of the summer holidays seemed as good a day as any, to saunter out into the sunshine on my own. [I may even see if it’s worth updating my resultant twitter handle @TheABB]. The reason? This week, the View From Here Magazine announced it will be closing on November 1st, 2014. After seven years on the writing team, it is not only the end of an era, but perhaps the start of a something new.

I started on the comms side, announcing writing events and industry news, and later moved into interviews. It’s been an amazing experience. Editor Mike French was a great remote-mentor. We’ve met only once, at the launch of his latest novel, Convergence, in The Dandelion Trilogy. Mike both enabled and encouraged me to interview some great writers, editors, scouts and publishers, every quarter. I learned something new each time, from every contribution, and had great fun. All of which I enjoyed, but some stand out in the memory more than others, and every one was unique.

I travelled to The London Book Fair in 2010, the year the Icelandic volcanic ash prevented many traveling from abroad by plane. The resulting bonus, many people’s meeting schedules became unexpectedly less full. I got squeezed in to film a serendipitous interview with Jamie Byng at Canongate and spoke with Helen Garnons-Williams, which led to producing a three part interview with her, the then newly head-hunted Editorial Director for Fiction at Bloomsbury UK.

Thank you to all whom I have interviewed since 2006, but also to readers and fellow unpublished writers who supported me, the team, and made the community at The View From Here what it is. With eclectic tastes, I learned much on writing, but also enjoyed the art of the creative collective.

The most recent interview I did for them, was here, with Isabel Allende. In her wide ranging career, it was hard to know what to ask and how to narrow it down, but one thing stays with me, in all she said, on the role of a writer:

“Writers have no obligation to comply with the official story or the official version, their only obligation is with their own consciousness. Honesty above all.”

The other part of my writing recently has been more akin to her engagement in politics and civil society. I’ve been on twitter really only for the last nine months, throughout the difficult pregnancy of care.data, pronounced care [dot] data. If you missed it, that’s the government proposed scheme to suck up our GP medical records, merge them with data already held at the central Health and Information Centre from our hospital care, and then use the new, richer record for commissioning purposes and potentially more, as yet undefined. Since our hospital and other health sourced-data is already sold to private companies and will continue to be so in future, but without having asked for informed consent, I’ve been a very skeptical critic and lay voice for positive changes for these wide secondary uses. [In case you’ve landed here for the first time, I’ve a background in tech database implementations, communications and change, and I took it upon myself to fully understand and follow the subject, a year ago when I came across the topic online, by accident.]

It looks now, as though some improvements on past failings will happen, but much remains undefined in detail, and as we all know, that’s where the devil likes to sup. I look forward to seeing some of the recently discussed changes and definitions in the Care Act, for example, becoming concrete.

So, that’s the reason for the insignificant changes on my part, and should I explain the image? I’ve chosen my favourite coffee mug for my header photo, with my favourite scarf. I use both often. The latter, reminds me a little of Bridget Riley’s op art. As a retro fan that appeals to me. The former, depicts the cover of Susan Stebbing’s most popular work Thinking to some purpose (1939) which was described on the cover of the first Pelican Books edition as being:

“A manual of first-aid to clear thinking, showing how to detect illogicalities in other people’s mental processes and how to avoid them in our own”

The work arose out of a synopsis she wrote for a series of radio broadcasts intended for the BBC. Published on the eve of the Second World War, Stebbing wrote:

“There is an urgent need to-day for the citizens of a democracy to think well. It is not enough to have freedom of the Press and parliamentary institutions. Our difficulties are due partly to our own stupidity, partly to the exploitation of that stupidity, and partly to our own prejudices and personal desires.”

Her words seem very timely.

To borrow from Wikipedia here: “This metaphor seems to me to be appropriate, because potted thinking is easily accepted, is concentrated in form, and has lost the vitamins essential to mental nourishment. You will notice that I have continued the metaphor by using the word ‘vitamins.’ Do not accept the metaphor too hastily: it must be expanded.”

I wrote about use of language and the need for common sense in its use around our health, as well as food marketing, in a previous post. But on the book, Professor Stebbing [British philosopher 1885- 1943] went on to say:

“Potted meat is sometimes a convenient form of food; it may be tasty, it contains some nourishment. But its nutritive value is not equivalent to that of the fresh meat from which it was potted. Also, it must have originally been made from fresh meat, and must not be allowed to grow stale. Similarly a potted belief is convenient; it can be stated briefly, sometimes also in a snappy manner likely to attract attention. A potted belief should be the outcome of a belief that is not potted. It should not be held on to when circumstances have changed and new factors have come to light. We should not allow our habits of thought to close our minds, nor rely upon catch-words to save ourselves from the labour of thinking. Vitamins are essential for the natural growth of our bodies; the critical questioning at times of our potted beliefs is necessary for the development of our capacity to think to some purpose.”

So here’s to that, my ‘critical questioning’ may have shifted from one arena into another, but I hope I continue ‘thinking to some purpose’.

privacy, words

That’s the power of artists’ privacy.

July 11, 2014 jenpersson

“That’s the power of artists’ privacy. It preserves the melodies otherwise drowned out by words, stories, information.”

Joshua Rothman – in The New Yorker

This article in The New Yorker on July 9th 2014, is a keeper. So I just had to keep a post linked here for posterity. He begins:

“These days, when we use the word “privacy,” it usually has a political meaning. We’re concerned with other people and how they might affect us. We think about how they could use information about us for their own ends, or interfere with decisions that are rightfully ours. We’re mindful of the lines that divide public life from private life. We have what you might call a citizen’s sense of privacy.

That’s an important way to think about privacy, obviously. But there are other ways. ” Read on here >> just, perfect.

Virginia Woolf, 25th January 1882 – 28th March 1941

“To be silent; to be alone. All the being and the doing, expansive, glittering, vocal, evaporated; and one shrunk, with a sense of solemnity, to being oneself…”

art, surveillance, words

Happy [belated] Birthday Kafka

July 4, 2014 jenpersson

Yesterday, July 3rd, was Kafka’s birthday. I started to write about him, and fell asleep with a book in my hand, waking in Kafkaesque style this morning not knowing where I was or why. But thank goodness, I did not wake up as a beetle. [1]

The overly used descriptor Kafkaesque has more recently come to take on a generic meaning, and his name associated with a dark view of the state and surveillance. [2] I wonder what he would have made of it?

The surveillance state is more contemporary than ever in mainstream thought, since Snowden, a year ago. We can look at The Trial, in which the protagonist is accused of an unknown crime, under assumed guilt and secrecy surrounding the process and reflect on the latest moves towards a secret court in the UK. In ‘The Great Wall of China‘ Kafka considered both points of the debate how to protect the People from outsiders, the Barbarians. As we see security at airports tightened today against an invisible threat, its central theme as valid today as in the 1920s, exploring the authority’s exploitation of fear and uncertainty over what constitutes a nation and what should be defended. In Das Schloss ‘the Castle‘ the authorities are drowning in documents, but cannot find the one which is relevant to the accused. Kafka questions the purpose of massive data gathering when the authorities appear not use the documents they collect. Both the latter stories mentioned in Alan Greenblatt’s article, on the Surveillance Society. [3]

His work is perhaps more relevant than ever.

As a Germanist, his work featured strongly in my studies, but I appreciate it more now, and am currently working on a project which is based in the time of his life (1883 -1924) and into the second world war.

It was both a fascinating and demanding time and place to live.

He was a German speaker living in what is now, the Czech Republic. The issues of identity and belonging are everyday ones for the residents like him, in a country whose borders were fluid and changing. Whose government switched the state language between Czech and German, and issued new passports in his lifetime, more than once, and in state institutions in which it was dictated how many employees should be of which – Czech or German – ethic origin. It is little spoken of today, but the fifty years before WWII set the stage for the struggle of ethnicity and its horrific consequence for millions of ordinary citizens in post war Czechoslovakia and its neighbours. The resulting forced migrations [4] of 3 million ethnic Germans from the Sudetenland alone, and the deaths of a disputed number in the region of half a million, and up to two million more who disappeared, is a little talked of consequence of the war and its preceding years.

He died before this, in 1924. His best known works are those in which the State, power, identity and emotional struggles are entwined in dark and often unexpected situations.

His work is ever popular, and his many themes, quotes and associated artwork are widely used. His concepts contemporary.

He was reportedly an avid reader, and advocated reading books which challenge:

“I think we ought to read only the kind of books that wound and stab us. If the book we are reading doesn’t wake us up with a blow on the head, what are we reading it for?”

– from a letter to Oskar Pollak (January 27, 1904)

He inspires me to keep writing mine.

******

Artwork from the Schocken/Pantheon Kafka library, cover designer Peter Mendelsund

[1] Metamorphasis: http://www.sparknotes.com/lit/metamorph/ – one of Kafka’s best known works

[2] Salon’s view of the NSA’s Internet surveillance program and how it uses Section 702 of the FISA Amendments Act.

[3] Alan Greenblatt article, Our Surveillance Society – What Orwell and Kafka might say – June 2013 http://www.npr.org/2013/06/08/189792140/our-surveillance-society-what-orwell-and-kafka-might-say

[4] Forced migrations of ethnic Germans in post WWII http://en.wikipedia.org/wiki/Flight_and_expulsion_of_Germans_%281944%E2%80%9350%29

#caredata, NHS England, poetry, words

An ode to care (dot) data

April 23, 2014 jenpersson

To be or not to be, that is the question.
O, what men dare do!
Two gentleman of Verona
Measure for measure
and in a Midsummer’s Night’s Dream
And like the baseless fabric of this vision
imagined there would be much ado about nothing.
Mum’s the word!
But this denoted a foregone conclusion.
Open-eyed conspiracy!
Wherefore are these things hid?

Oft expectation fails, and most oft there
Where most it promises.
The plan would be a winter’s tale.
But as you like it
or as not
Damn’d be him that first cries, ‘hold enough’!
These tedious old fools!
The tempest doth make delay.

Will the work done be love’s labour lost?
Will the storm nay be calmed?
Sigh no more, ladies, sigh no more,
Men were deceivers ever.

Would they want that chinks be earned
Gold? Yellow, glittering, precious gold?
No, Gods, I am no idle votarist!
All gold and silver rather turn to dirt!
As ’tis no better reckon’d, but of those
who have want.
“Shylock, we would have moneys,” you say so
the pound of flesh which I demand of him
is dearly bought. ‘Tis mine.

What might be toward, that this sweaty haste
Doth make the night joint-laborer with the day:
Who is’t that can inform me?
Friends, Romans, countrymen, lend me your ears!
Who bare my letter, then, to Romeo?
The letter was not nice but full of charge,
Of dear import, and the neglecting it
May do much danger!

Ignorance is the curse of God;
knowledge is the wing wherewith we fly to heaven.
No legacy is so rich as honesty.

For all this same, I’ll hide me hereabout.
His looks I fear, and his intents I doubt.
And exempt from public haunt,
finds tongues in trees.
You are thought here to the most senseless and fit man for the job.
Alas poor Yorrick
a fellow of infinite jest, of most excellent fancy.
Conscience doth make cowards of us all.

And enterprises of great pitch and moment
With this regard their currents turn awry,
And lose the name of action.
What’s more to do,
Which would be planted newly with the time,
How poor are they that have not patience!
Yet, do thy worst, old Time: despite thy wrong.

Don’t trust the person who has broken faith once?
The quality of mercy is not strain’d
I have spoke thus much
To mitigate the justice of thy plea
If we should fail –
We fail!
But screw your courage to the sticking-place,
And we’ll not fail.
All’s well if all ends well.
Love all, trust a few, do wrong to none.

Now this overdone or come tardy off,
though it make the unskillful laugh,
cannot but make the judicious grieve,
the censure of the which one must in your allowance
o’erweigh a whole theatre of others.

What’s done can’t be undone.
Forget, forgive, conclude, and be agreed: Our doctors say this is no time to bleed.

*****
Words taken in tribute, from the works of Shakespeare
(23 April 1564 – 23 April 1616).
All his words, not necessarily in the right order.
Celebrated on the date of the 450th anniversary of his birth, on Metro considered, what if Shakespeare had Twitter?

#caredata, care.data, communications, leadership, transparency, words

Care.Data – Raw Highlights from The Health Select Committee

April 10, 2014 jenpersson

Words from The Health Select Committee 8th April 2014 – created via Wordle

From the Health Select Committee hearing on Tuesday April 8th, I have waded through all the words to come out with what I think are raw highlights of the key learnings and issues raised. The original in context, is here. The image is an indication of the emphasis of who spoke about what, based on word count alone.

Highlights from the Health Select Committee Members:

“…because what was happening in that meeting was that a lot of wriggling was going on”
“But you wrote to us, Mr Jones, with Mr Kelsey. Following on from my colleagues, we are not quite sure that the answers are very helpful. Could you turn to the letter and I will ask you for some information? This is very concerning and I hope this will be published on someone’s website—either yours or certainly the Health Committee’s website—so that people can see some of these answers and follow them up.”
“When things go wrong, as they appear to have done, we are entitled to ask you questions. I am absolutely appalled. I think the majority of us are, which is why you are back here again to try to work out why you don’t know what is going on in your organisation. This is a simple thing. It is either in the agreement, or it is not. “
“If we go back to the insurance actuaries—the Staple Inn Actuarial Society—these comments are from the report that it produced on the use of 188 million records taken from HES. It talked about the data as being “highly detailed”. We get an answer back saying that the data are in aggregated and anonymised form. Don’t forget that the HES database started off as an admin database for handling payments and information about patients. It was never set up to feed into the insurance industry, was it? After it had run all the things that it wanted for commercial reasons against hospital data, it said that HESID “does allow all periods of care for” a patient “to be identified and linked””
“Well, there is, because normally in the civil service, when there is a debate about something, civil servants will prepare a report, and find out the information and give it to the Minister, so that the Minister tells Parliament the correct position. That is not happening here, is it? A Minister can go into the Chamber and say something that is totally wrong…”
“We need to know what is out there now. There is a very strong feeling—I subscribe to it—that this data is not protected enough and has been let go. It is out there. You mentioned that there were 249 commercial reuse licences, of which 112 are left, but some of the ones I mentioned are also selling it on to other people. We have had lots of examples.”
“I looked at this [HES & other systems opt out] form and I found it difficult. We have been navigating around this system. After all these quite intrusive demands for information, we get on to an explanation of what happens if you request your patient information to be removed or anonymised. It states that “your data will be anonymised rather than removed”, but it goes on to say that there is a further step where you can request removal of your records from the NHAIS. Then it says this most damning thing: if you do that, your GP would no longer wish to have you on their list, and you would not be called for screening for things such as aortic abdominal aneurysm, which is a serious condition. Effectively, that is saying to people, “Yes, we can remove your records, but your GP wouldn’t want you on his list, and you wouldn’t be called for quite serious medical screening.” Surely there is something that falls short of that where a person can say, “I don’t want my records sold to these commercial companies, or to be used by insurance actuaries or comparison websites; I just want them used for my care.” I have asked the Minister this. You have produced a form that, I have to tell you, is quite scary. It is quite intrusive and it is quite scary. It says that if you fill it right to the end—it is quite confusing as to whether there are different steps here—your GP would no longer wish to have you on their list, and you wouldn’t be called for screening for serious medical conditions.” [note this is not the care.data opt out, but an additional choice]
“What we are talking about is audit. Can you audit? There are apparently going to be audits. Can you audit all the data releases? Can you say for all the HES data where it has gone, who is using it and for what?”
“there is a real difference from your pronouncements of what you say is the situation with data and what the people out there—commercial organisations that have HES data and already have large databases—are saying.”
“You have been seeking to demonstrate to us that you believe that the control regime you apply is effective for HES data, but now we are saying that for GP data, the control regime in future will be fundamentally different.”
“You said it would be treated differently “at its launch”. What changes do you anticipate? In other words, are we actually saying that we will pretend to give you additional security until we get that information from the public and the GPs, and after that we will subject it to different tests? In other words, this is a con job isn’t it? Dick Turpin with or without a mask is still Dick Turpin.”
“We don’t. There is actually no right to opt out in law. The Secretary of State has agreed that any objection will be dealt with, but we do not have a legal right.”
“That is CPRD, isn’t it? Is there any plan to bring CPRD under the HSCIC?”
“But the question I put to the Minister, which we do not seem to be getting to, is that I think there is a very strong drive for people to say, “I want my individual health records to be used for my care, and even for commissioning that care, but not for all these other uses.” I think that is a very powerful desire. Why shouldn’t people ask for that? The data is about them.”
“The implied consent model breaks down at the point at which people’s data starts to be used for marketing purposes.”
“It is different if your data is being used by researchers and academics, and by people who have built up a career and have integrity.”
“A lot of people are not comfortable that their data are used for such things, and nor am I. You say that, constitutionally, you cannot make that distinction, but that is the point at which we lose confidence in the consent that was always there.”
““Without pseudonymisation, you risk substantial levels of patient and citizen objections. Without pseudonymisation, you lose data and devalue your dataset. Without pseudonymisation, the GP patient relationship is damaged and care may be impaired.” I must say, I think the patient reasons are a lot more compelling than the IT management reasons.”
“would it not be prudent to wait until you have that report on cyber-security before we press ahead with the data extraction?”

Highlights from the Health and Social Care Information Centre (HSCIC) Max and Manning:
“we have inherited the duties and responsibilities of the information centre and its 500 people, although they have been rewritten in the Act, but that is one part of what is now an organisation of 2,200 people”
“if you can demonstrate where we have not acted within the current law and the current regulations…”
“We need to be much more transparent about that.”
“The security threat and the volume of data are much greater, and the public’s confidence in public bodies to handle data—not just us, but across the whole public sector—has significantly changed. ”
“When I became chairman last June, it was clear that the approaches that had been adopted by the information centre were no longer entirely appropriate, given both the degree of data we were able to collect and a change in public expectations. It was also clear that some of the processes that the previous information centre had been operating were not as transparent or as consumer-friendly, if you like.”
“We think that, as of April 2013, there were 249 organisations that had extant data-sharing agreements issued by the NHS information centre…those data-sharing agreements applied to where we are issuing pseudonymised or identifiable data. This is where there is a theoretical risk of identification, so that is where we have data-sharing or data-reuse agreements in place. There were 249 in April that had been issued by the NHS IC of which, in April this year, there remain 112, so they are running off as we go forward.”
“One of the areas that we think they should look at is indeed the extent to which we share or should share data with other Government bodies. This is an area where there is a lack of clarity and a great deal of sensitivity. We know from our research, by the way, that one area where we have absolute sensitivity is in this. People are very, very worried about the use of their medical records in any way that might have an impact on their tax returns, their benefits payments, their housing, or any of these things. This is where we would very much welcome the advice of Parliament and CAG—the extent to which this is possible. At the moment, as you know, we have not released any data to DWP or any such body but we absolutely recognise that it is a key issue.”
“The organisation used our logo without coming to us to seek our permission to do so. They were entitled to have access to that data under the agreement which they had..”
“We have an accountable relationship with our sponsor branch within the Department of Health, which results in us having a formal monthly meeting. I meet the permanent secretary on a monthly basis. That is the nature of an arm’s length body. We are accountable, then, through our attempt to be as transparent as possible to the public and Parliament.”
“Government policy has for a long time been to encourage the use of this data to advance both the health and social care system in this country and the economy.”
“.. I have a suspicion that it is because they [GPs] will not get paid if you are not on the list*. You won’t appear on the register, and if you are not on the register, they won’t get paid.” [*not with reference to care.data but to the ‘third’ opt out form to opt out for other systems stored at HSCIC].
“At its launch it will be fundamentally different, because that was the basis on which the independent advisory group agreed to the extraction going forward. That was the basis, as I understand it, that NHS England negotiated with the RCGP and the BMA and other representatives. I think that is entirely appropriate.”
“As you are probably aware, there is considerable pressure from medical charities and researchers on the limitations—”
“There are no plans that I am aware of. Just for clarity we do handle data on behalf of CPRD to ensure the pseudonymisation process. We act as a contractor for CPRD”
“I cannot answer that question. I do not have that responsibility. You have to address the question to NHS England.”
“We are extremely concerned about the current threats to data security across the whole health and social care system. We will be carrying forward a series of actions, as I said, to significantly increase our surveillance and measures to attempt to get an enhanced level of assurance across the system as a whole.”
“The record of our ability to deliver high-quality technology systems is in the fact that the lights are on and on all the time in the NHS.”
“We are planning [for care.data launch] on the basis of what has been the last announcement, which is that it will be, I think, in October.”
“We have a good record. I used to be part of the Connecting for Health regime. We had a good working relationship with Atos running the choose and book service. Its delivery and performance on this first extract with the GP extraction software over the last few weeks has been encouraging.”
“Some of the older systems we have within the health and social care system simply cannot handle objections.”
“Patients have the ability to record two types of objection. The first type of objection is to any detailed information about them leaving their GP practice to the HSCIC. “
“The issue regarding what we would call dynamic consent—giving consent for different purposes—is one that we are conscious of. We think that we need to move in that direction.”
“I completely accept that the current consent models are too limited and that the objection process is too complicated. We need to be able to make it reversible as well.”
“the position in terms of care.data is entirely circumscribed. We have already identified that that data is to be used only for very specific purposes; it will not go beyond that purpose.”
“All Governments have seen that as being a base upon which we can support and promote our health care and pharmaceutical industries. The health care research industry in this country is worth £5 billion a year, which is critical to the UK economy, and it is fundamentally linked to availability of data. The fact that we have that data is critical to the continuation of that research industry in this country. We must therefore balance issues such as privacy, access and the support of the industry. People have to have that debate, but we need to identify benefits from this data, as well as the issues you have raised.”
“Secondly, we have to recognise that we as the HSCIS have an awful lot of other information. When we think about pseudonymisation, we are going to link these data we collect to other data sources”
“We are therefore talking to the research community. It may well be a sensible solution with regard to supporting commissioning, where we may look at the costs and feasibility, to move to a situation where we will effectively provide an analytical service where researchers and others can effectively undertake the research within our data lab. That is something we think is a very good idea. HMRC do it already, and we have looked at that, and also the CMS in the States, which is the equivalent body to ourselves. We think it is very good. I am meeting with the MRC in the near future to discuss it for researchers. “
“In so doing, there was a view taken by the Department of Health and their lawyers that the document that we then produced did not meet the constitutional requirements of being a code of practice. What we did do was publish a guide to confidentiality which meets all the requirements of the code of practice. “
“In terms of your care record, if you opt out of type 1, your data will not be transferred for the purpose of the care.data programme for secondary uses. It won’t affect, by the way, the transfer of data for direct care. It won’t impact on any direct service to you as a patient.”
“In terms of the number of people who have acted to opt out, [from secondary uses of hospital data, HES] it is 14 over the past four years.”
“we welcome the proposed involvement of the CAG, which would bring precisely that ethical and moral dimension to these decisions. We agree entirely that that dimension has been absent in the past..”
“It does cover HES data. At the moment, the only users of that HDIS service are in the public sector, not the private sector, during the trial period. We also make sure that all individuals who are users have been through individual training.”
“There are always going to be lots and lots of people who want to accumulate lots and lots of data in their own boxes. One of the reasons why we are interested in exploring the idea is because we are getting a plethora of databases being accumulated in universities and various other places. That gives us a technical problem because of the transformation errors that arise. These databases therefore are changed as they go through time. I suspect that we are always going to have individuals who say, “I want to have my particular database.” We will have to discuss whether that will be feasible; there will always be that tension.”
“I know it is antiquated, but the danger is not the technology, but the people.”
“it deals with security and may include matters that we do not want to have in the public domain, but I am sure we could share it with the Committee on an individual basis. However, I do not want to go through the detail.”
“Our website is incredibly complicated, to say the least—I think we all recognise that. It is extremely good if you plough through it, but if you are unlucky, you will end up downloading 10 million lines of prescribing data.”
“You have raised an interesting point. When somebody says they do not want us to hold their record, do we delete it?”

HSCIC website

Share

Share

“To be silent; to be alone. All the being and the doing, expansive, glittering, vocal, evaporated; and one shrunk, with a sense of solemnity, to being oneself…”

Share

Share

Share

Share

Thinking to some purpose