Category Archives: G8 dementia summit

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Detailed results from twelve academics about their perception of the G8 Dementia Summit

As you’ll know, I had the pleasure of returning to Scotland for the Scottish Clinical Dementia Research Network one-day conference held on 24 March 2014 at the Beardmore Hotel Glasgow (nr Dalmuir), on perceptions of the G8 Dementia conference held in December 2013.

I am providing the answers verbatim so that you can see the exact wording of them.

All the delegates were people who had been following this conference, but all reported an academic interest.

I have already reported the 88 responses from the general public about their perception of this conference. This work identified quite clearly who were perceived to be the biggest ‘winners and losers’.

 

1. What do you feel the Summit set out to achieve?

1 Its own perception of beliefs.
2 To raise awareness and treatment: showing huge increases in numbers.
3 To encourage international cooperation.
4 Raise the profile of Alzheimer’s disease; improve the profile of politicians.
5 Improve biological research; boost Pharma funding.
6 Increase research; better coordination; raise profile of dementia; and .dementia research.
7 Information; learning.
8
9
10
11 Don’t know. Window dressing?
12 To be seen to be doing something.

 

2. Do you have any concerns about the way the Summit was conducted?

1 More about early intervention; but what about those who already suffer?
2 Yes – final reports not given.
3
4 I have limited knowledge of this area.
5 Scared people with military language; no mention of wellbeing; several opinion leaders not advocating living well with dementia.
6 No.
7 Not talking to people who understand people are different.
8
9
10
11 Hard to tell who was invited but live streaming all very well but hard to follow it during a busy day at work. Seemed to have a pre-determined outcome/agenda. Ignores the needs of people currently living with dementia.
12 1. Language used – i.e. cure, timebomb 2. What about people who are already living with dementia and their carers?

 

 3. What do you think are realistic positive outcomes of the Summit?

1
2
3 Greater awareness at all levels.
4
5
6 Raised profile of dementia.
7 Break down barriers.
8
9
10
11 Gave a certain focus to dementia but the notion of finding a cure by 2025 seems like a hostage to fortune. Would be great if that was a realistic goal but not sure it is.
12 Not sure.

 

4. Do you feel there are currently negative perceptions of people with dementia?

1
2
3
4 Yes – mental health issues may still be identified; poorly understood by the general public.
5 Yes – everywhere.
6
7 Treat like kids – no respect.
8
9 Some – dithering, challenging, old.
10 Yes – a lot of fear.
11 Yes. Also negative perceptions of older people generally. This has implications at all fronts of the dementia diagnosis – diagnosis, treatment(s), end of life. The .media doesn’t help either.
12

 

5. Do you feel there are currently positive perceptions of people with dementia?

1
2 Yes – positive perception increasing.
3
4 Possibly but in very small pockets.
5 Yes – but we need to stop all this “otherness” nonsense.
6
7 Within informed sectors.
8
9
10 No.
11 To an extent, because I am aware of people living well with dementia but it is countered by lots of celebrities talking (mainly) about their dire experiences and the way that the media write about dementia.
12

 

6. Ultimately, do you feel the Summit will change perceptions of people with dementia?

1
2
3
4
5 Make everyone think Alzheimer’s = Dementia (simply.)
6 Yes, it’s the start of a slow process.
7
8
9
10
11
12

 

7. How would you have done things differently in the Summit?

1
2 Don’t know: one way would be to increase funding to every aspect.
3
4
5 1. wider engagement; 2. Invest in more care and support; 3. Add in medical humanities; 4. Think about stigma.
6
7
8
9
10
11 Don’t know.
12 Focus on cause, care/treatment + living well/care.

 

8. How do you feel about the sharing of personal clinical data to improve research and treatment initiatives for dementia?

1
2 No problem here – Diabetes Scotland already does this.
3 Depends on maintenance of confidentiality. Not altogether clear at the moment.
4 Anything that helps; however anonymity protected.
5 This was a big part of the G8 Dementia but was cloaked in terms not clear.
6 It is necessary for all diseases.
7 Very supportive.
8
9
10 Not sure.
11 Good idea provided it is stored responsibly – I have my doubts about that though.
12 In view of recent scandals etc – only possible if appropriate safeguards (?is it possible)

 

 

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Did the Prime Minister's Dementia Challenge park a 'National Care Service' for good?

I’m still unclear where and when the Prime Minister’s Dementia Challenge came about.

Airbrushed for challenge

The lack of a clear audit trail for the Prime Minister’s Dementia Challenge

I know that it was launched in March 2012.

“Dementia” is not mentioned in the Conservative Party Manifesto for the general election of 2010. It is however mentioned in the Coalition Agreement, with broadly the same wording as the Liberal Democrat manifesto 2010, but that still doesn’t explain how this became the “Prime Minister’s Challenge”.

In summary, the one line in the Coalition Agreement is drafted as follows:

“We will prioritise dementia research within the health research and development budget”

But still no specific mention of that “Challenge”.

The distortion effect of the Prime Minister’s Dementia Challenge

The Dementia Challenge prioritises the Alzheimer’s Society, and it is clear that other charities, such as Dementia UK (which is experiencing threats of its own to its superb ‘Admiral nurses’ scheme) trying to plough on regardless.

The £2.4 million “Dementia Friends” programme emerged from the Social Fund and the Department of Health. The scheme has been launched in England at first, and it is said that the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

Indeed, many supported the fundraising for Dementia UK only this morning in the London Marathon too.

Dementia UK London marathon

There is no official cross-party consensus on the “Prime Minister’s Dementia Challenge”, though individual Labour MPs support the activities of “Dementia Friends”.

The market dominance of the Alzheimer’s Society for ‘Dementia Friends’ compared to other charities does not seem to have been arrived at particularly democratically either. There is no conceivable reason why other big players, such as “Dementia UK” or the Joseph Rowntree Foundation, were excluded from this friendship initiative.

Ironically, Japan upon which befriending is modelled is not ashamed of its care service.

It is palpably unacceptable if people are ‘more aware of dementia’ without a concominant investment in specialist memory clinics, or care and support services.

Genuine concerns from stakeholders involved with dementia care

It is clear amongst my followers on Twitter that the nature of this “Challenge” is causing considerable unease.

Concidentally I was reminded of this this morning:

But there are now some very serious questions about this policy, particularly from the ‘zero sum gain’ effect it has had knock-on in other areas of dementia policy.

When @Ermintrude2 looked into this at the time, the response was a bit confused.

And indeed Ermintrude has penned some thoughts at the time on this high impact blog.

What has happened to social care in the name of ‘improvement’, I agree, is very alarming.

But we do know full-well about the ‘democratic deficit’.

False pledges and threats, and unfulfilled promises

The general public were unaware that a 493 Act of parliament called the ‘Health and Social Care Act’ would be sprung on them, with a £3 bn top-down reorganisation.

But this was Lansley’s “emergency conference” on Labour’s “secret death tax” in February 2010.

A number of views were expressed at the time, including the need for better care from the Alzheimer’s Society at the time under a different CEO.

The full thrust of ‘Dementia Friends’ is a total change of mood music from February 2010’s concerns of the Alzheimer’s Society reported here:

“Care and treatment for sufferers of dementia should be at the heart of the general election campaign, the Alzheimer’s Society charity has said.”

Where has the Society been in campaigning on swingeing cuts in social care?

Also, in February 2010, Gordon Brown’s speech at the King’s Fund was reported, where Brown made a significant pledge.

“Mr Brown also announced that the government’s planned reforms to community and primary care health services also included a commitment to provide dedicated “one-to-one”nursing for all cancer patients in their own homes, over the next five years.”

We do know that the NHS has been persevering with this programme with ‘efficiency savings’.

In October 2012, it was reported that nearly £3bn was indeed returned to the Treasury, and it is unclear how, if it at all, it was returned to front line care.

So it’s possible that Brown’s plan, the subject of a hate campaign at the time from the Tory press, might have worked in fact.

Dilnot

In 2010 Andrew Dilnot had been tasked by the then government to propose a solution to the crisis in social care.

The response was from February 2013, after the top-down reorganisation.

“Mr Dilnot suggested a cap on how much anyone would be required to pay for their care costs over the course of a lifetime, suggesting a ceiling of between £25,000 and £50,000 (in 2010/11 prices). Beyond this point, the state would take on responsibility for the majority of the bill.

The Government today announced that from 2017 it intends to establish a cap of £75,000 in 2017 prices which, according to Mr Dilnot’s calculations, equates to approximately £61,000 in the 2010/11 prices (the basis of his report). If we’re to make a claim about the extent to which the Government has ‘watered down’ Mr Dilnot’s proposal, it’s crucial that we account for this inflationary effect.”

Resurrection of the ‘National Care Service’ by Andy Burnham MP yesterday, Shadow Secretary of State for Health

This issue may have to be revisited at some stage. Andy Burnham MP yesterday in the Bermondsey Village Hall, without much press present, mooted the idea of how a social care service could be established on the founding principles of the NHS, and would be a significant departure from the piecemeal 15-minute slot carers.

Burnham stated that care provided by inexperienced staff on zero-hour contracts was a problem.

An experienced member of the audience highlighted the phenomenal work done by unpaid family caregivers particularly for dementia.

The topic of a compulsory state insurance is interesting.

Social health insurance systems share a number of similar features:

  • Insured persons pay a regular contribution to a health insurance fund based usually on income rather than reflecting their risk of illness.
  • Clinical need and not ability to pay determine access to treatments and health care.
  • Contributions to the social insurance fund are kept separate from other government mandated taxes and charges.

In his classic article, Kenneth Arrow (1963) argues that, where markets fail, other institutions may arise to mitigate the resulting problems: ‘the failure of the market to insure against uncertainties has created many social institutions in which the usual assumptions of the market are to some extent contradicted’ (p. 967).

Rationale for this method of funding

A great advantage of ‘social insurance’ is, because membership is generally compulsory, it is possible (though not essential) to break the link between premium and individual risk.

There might be other important aspects. For example, both employers and employees pay contributions. Also, there might be Government support for those who are unable to pay goes through the insurance fund.

I have written before on the increasingly sophisticated methods of genetic diagnosis of dementias, and how this might impact on our health systems.

The philosopher John Rawls (1972) argues that in a just society the rules are made by people who do not know where they will end up in that society, that is, behind what he called the “Veil of Ignorance”.

Insurance can be interpreted as an example of solidarity behind the Veil of Ignorance: a person who joins a risk pool does not know in advance whether or not he will suffer a loss and hence have to make a claim. Insurance thus has moral appeal.

Ultimately there is a problem as to what type of care might be covered.

Does the policy cover only residential care, or also domiciliary care; is a person entitled to residential care on the basis of general infirmity or only if he or she has clearly-defined, specific ailments?

In the Dilnot recommendations, the cap on care payments did not include the “hotel costs” that a care home will charge. In other words, people in residential care will still need to pay (at the Dilnot report’s estimate) between £7,000 and £10,000 per year to fund their accommodation and living expenses. 

Furthermore, how will the answers to these questions change with advances over the years with changes in the actual prevalence of dementia, or in the implementation of ever increasingly sophisticated medical technology?

It has been proposed (Lloyd 2008) that long-term care could be financed via social insurance, with the premium paid as a lump sum either at age 65 or out of a person’s estate. The idea behind this proposal is twofol.

Firstly, as a person gets older, the range of uncertainty about the probability of needing long-term care  becomes smaller.

Secondly, if a person can buy insurance for a single premium payable out of his or her estate, the cost of long-term care does not impinge on his or her living standard during working life or in retirement, but can frequently be taken from housing wealth.

Development of social health insurance systems have normally been in response to concerns that inadequate resources were mobilised to support access to health services.

The continuing swingeing cuts in social care

And these cuts have continued: this report is from March 12 2014,

An analysis by Mind found that the number of adults with mental health needs who received social care support has fallen by at least 30,000 since 2005, a drop of 21%. Cuts to local authority social care budgets – the majority of which have hit since 2009 – have left a funding shortfall for care of up to £260 million, the charity said.”

Since there is no simple answer to the question of how much is the appropriate level of support, the issue of adequacy is best thought of as being a level that is considered appropriate in the country given its total resources, preferences and other development priorities.

And where are people from charities campaigning on this issue?

This issue of course was not considered at all in the G8 Dementia Summit, which focused on more monies for personalised medicine, genetic and molecular biology research, in response to concerns from an “ailing industry”.

Conclusion

I am actually truly disgusted at this unholy mess.

 

 

 

References

Arrow, Kenneth F. (1963), ‘Uncertainty and the Welfare Economics of Medical Care’, American Economic Review, 53: 941–73; repr. in Cooper and Culyer (1973: 13–48), Diamond and Rothschild (1978: 348–75), and Barr (2001b: Vol. I, 275-307).

Lloyd, James (2008), Funding Long-term Care – The Building Blocks of Reform, London:

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Who were the biggest winners and losers of the G8 dementia summit? My survey of 96 persons without dementia

G8

Background

The G8 summit on dementia was much promoted ‘to put dementia on top of the world agenda’.

It is described in detail on the “Prime Minister’s Dementia Challenge” website.

I went only last Monday to Glasgow to the SDCRN conference retrospective on the G8 dementia. It was a sort-of debrief for people in the research community about what we could perhaps come to expect. And what we’d come to expect, just in case any of us had thought we’d dreamt is was the idea of identifying dementia before it had happened or just beginning to happen and stopping it in its tracks then and there with drugs.

This is of course a laudable aim, but an agenda utterly driven by the pharmaceutical industry. My philosophy (not mine uniquely) “Living well in dementia” is called “non-pharmacological interventions” to denote a sense of inferiority under such a construct.

This slide had a lot of criticism

Aim

There has never been a media report on people’s views about the G8 dementia summit.

There has never been an analysis of the messaging of this summit in the scientific press, to my knowledge.

This study was conducted as a preliminary exploratory study into the language used in a random sample of 75 articles in the English language.

Methods

I completed a survey of reactions to the G8 dementia summit held last year in December 2013. I recruited people off my Twitter accounts @legalaware and @dementia_2014, and there were 96 respondents. Responses to individual items varied from 63 to 96.

I used ‘SurveyMonkey’ to carry out this survey. With ‘SurveyMonkey’, you cannot complete the survey more than once.

(I have also already collected 19 detailed questionnaire responses from Clydebank which I intend to write up for the Alzheimer Europe conference later this year, also in Glasgow. And also six people living with dementia also responded; and I’ll analyse these replies separately. I reminded myself by looking at the programme of the summit again what the key topics for discussion were – drugs, drug development and data sharing, with a sop to innovations and provision of high quality of information. It is perhaps staggering that there has been no detailed analysis of who benefited from the G8 dementia, but given the nature of this event, the media reportage and the events of my survey, this retrospectively is not at all surprising to me.)

Exclusions

Persons with dementia were directed to a different link (of the same survey.)

Results

The results encompass a number of issues about media coverage, the relative balance of cure vs care, and who benefited.

Media coverage

Overall, most people had not caught any of the news coverage on the TV (56%) or radio (55%). But most had caught the coverage on the internet, for example Facebook or Twitter (66%). 87% of people said they’d missed the live webinar. It was possible to answer my survey without having caught of any of the G8 seminar, however.

So what did people get out of it and what did they expect? Most people did not think the summit was a “game changer” (53% compared to 16%; with the rest saying ‘don’t know’), although the vast majority thought the subject matter was significant (82%) (n = 90).

Therefore, unsurprisingly, a majority considered the response against dementia to be an opportunity for policy experts to produce a meaningful solution (58%). However, it’s interesting that 24% said they didn’t know (with a n = 90 overall.)

In summary, they had high hopes but few thought it was a good use of a valuable opportunity to talk about dementia.

Many of us in the academic community had been struck in Glasgow at the sheer “terror” in the language used in referring to dementia. A large part of the media seemed to go for a remorseless ‘shock doctrine’ approach. Prof Richard Ashcroft, a medical law and bioethics expert from Queen Mary and Westfield College, University of London, wrote a very elegant piece about this, and his personal reaction, in the Guardian newspaper.

In terms of language, the respondents were consistent in not viewing the response against dementia as a “fight” (61%), a “war” (84%), a “battle” (72%) or an “epidemic” (70%) (n ranging from 83 to 86). 56% of people considered it unreasonable to speak of “turning the tide against dementia”. In terms of personal reactions, 82% considered themselves not to be “shocked” by dementia.

91% of people thought it was appropriate to talk of ‘living with dementia’ in the early stage (n = 85), but 82% of people did not think it was more appropriate to talk of people ‘suffering from dementia’ at this early stage (n = 86). In retrospect, I should’ve asked whether the appropriate phase was ‘living well with dementia’, so I suppose nearly 91% endorsing ‘living with dementia’ at all is not surprising. I have previously written about the use of the word “suffering”, as it is so commonly used in newspaper titles of articles of dementia here, though I readily concede it is a very real and complex issue.

living well suffering

The opportunity presented by the G8 dementia summit: cure vs care

Despite all the media hype and extensive media coverage of the G8 dementia summit, 70% of people “did not feel excited about the world or country’s response to dementia” (n = 86).

But it is possibly hard to see what more could have been done.

The presentation by Pharma and politicians for their dementia agenda was extremely slick. This may be though due to a sense of politicisation of the dementia agenda, a point I will refer to below.

Q21

Early on in the meeting, World Health Organization Director-General Magaret Chan reminded the delegates – including politicians, campaigners, scientists and drug industry executives – how much ground there was to cover.

“In terms of a cure, or even a treatment that can modify the disease, we are empty-handed,” Chan said.

“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS, and we should be just as resolute today,” Cameron said. “I want December 11, 2013, to go down as the day the global fight-back really started.”

It is therefore been of conceptual interest as to whether dementia can be considered in the same category as other conditions, some of which are obviously communicable. In my survey, people reported that that, before the summit, they would not have considered dementia comparable to HIV/AIDS (88%), cancer (70%), or polio (92%) (n = 86).

This is interesting, as a common meme perpetuated also by certain parliamentarians (who invariably spoke about Dementia Friends too) was that the same sort of crisis level in finding a cure for dementia should accompany what had happened for AIDS decades ago.

Biologically, the comparisons are weak, but it was argued that AIDS, like dementia now, suffered from the same level of stigma. Dementia, however, is an umbrella term encompassing about a hundred different conditions, so the term itself “a cure for dementia” is utterly moronic and meaningless.

Also in my survey, 67% of people reported that they did not feel more excited about the future of social care and support for people living with dementia (n = 85), and virtually the same proportion (66%) reported that they did not feel excited about the possibility of a ‘cure’ for dementia (defined as a medication which could stop or slow progression) (n = 85).

This reflects the reality of those people living in the present, perhaps caring for a close one with a moderate or severe dementia.  It had been revealed that budget cuts have seen record numbers of dementia patients arriving in A&E during 2013. Regarding this, it was estimated that around 220,000 patients were treated in hospital as a result of cuts in social care budgets, which left them without the means to get care elsewhere.

It is known that the government has cut £1.8 billion from social care budgets, which is in addition to the pressure being applied to GP surgeries. In 2008 the number of dementia patients arriving in A&E was just over 133,000. The concern is that the Alzheimer’s Society, while working so close to deliver “Dementia Friends”, is not as effective in campaigning on this slaughter in social care as they might have done once upon a time. Currently, we now have the ridiculous spectacle of councils talking about dementia friendly communities while slashing dementia services in their community (as I discussed on the Our NHS platform recently).

Why Big Pharma should have felt the need to breathe life into the corpse of their industry for dementia is interesting, though, in itself. Pharma obviously is ready to fund molecular biology research, and less keen to fund high quality living well with dementia, and there is also concern that this agenda has pervasively extended to dementia charities where “corporate capture” is taking place. A massive theme of the G8 dementia summit was in fact ‘personalised medicine’. For example, there is growing evidence that while two patients may be classified as having the same disease, the genetic or molecular causes of their symptoms may be very different. This means that a treatment that works in one patient will prove ineffective in another. Nevertheless, it is argued the literature, public databases, and private companies have vast amounts of data that could be used to pave the way for a better classification of patients. According to my survey, despite ‘personalised medicine’ being a big theme of the summit, strikingly 66% felt that this was not adequately explained. There’s no doubt also that the Big Pharma have been rattled by their drugs coming ‘off patent’ as time progresses, such as donepezil recently. This has paved the way for generic competitors, though it is worth noting that certain people have only just given up on the myth that cholinesterase inhibitors, a class of anti-dementia drugs, reliably slowed the progression of Alzheimer’s disease in the majority of patients.

Who benefited?

In terms of who ‘benefited’ from the G8 dementia summit, I asked respondents to rate answers from 0 (not at all) to 5 (completely).

Research First of all, it doesn’t seem researchers themselves are “all in it together”. For example, these are the graphs for researchers (molecular biology) (n = 68) and researchers (wellbeing) (n = 68), with rather different profiles (with the public perceiving that researchers in molecular biology benefited more). This can only be accounted for by the fact there were many biochemical and neuropharmacological researchers in the media coverage, but no researchers in wellbeing.

37 38

Pharmaceutical industry But the survey clearly demonstrated that the pharmaceutical industry were perceived to be the big winners of the G8 dementia (n = 68).

Ministers are hoping a government-hosted summit on dementia research will help boost industry’s waning interest in the condition, and to some extent campaigners have only themselves to blame for pinning their hopes on this one summit.

The G8 Summit came amidst fears the push to find better treatments is petering out, and it is still uncertain how effective some drugs currently in Phase III trials might be, given their problems with side effects and finding themselves into the brain once delivered.

39

And the breakdown is as follows:

table

Charities  The survey also revealed a troubling faultline in the ‘choice’ of those who wish to support dementia charities, and potential politicalisation of the dementia agenda. It has been particularly noteworthy that this recent initiative in English policy was branded “the Prime Minister Dementia Challenge”, and ubiquitously the Prime Minister was (correctly) given credit for devoting the G8 to this one topic.

A previous press release had read,

“Launched today by Prime Minister David Cameron, the scheme, which is led by the Alzheimer’s Society, people will be given free awareness sessions to help them understand dementia better and become Dementia Friends. The scheme aims to make everyday life better for people with dementia by changing the way people think, talk and act. The Alzheimer’s Society wants the Dementia Friends to have the know-how to make people with dementia feel understood and included in their community.. By 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England today and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Each Dementia Friend will be awarded a forget-me-not badge, to show that they know about dementia. The same forget-me-not symbol will also be used to recognise organisations and communities that are dementia friendly. The Alzheimer’s Society will release more details in the spring about what communities and organisations will need to do to be able to display it.”

Therefore, the perception had arisen amongst the vast majority of my survey respondents that large charities were big winners from the G8 dementia summit. This is perhaps unfair as there was not much representation from other big charities apart from the Alzheimer’s Society, for example Dementia UK or the Joseph Rowntree Foundation.

I feel that this distorted public perception in the charity sector for dementia is extremely dangerous.

And this finding is reflected in the corresponding graph for ‘small charities’. Small charities were not represented at all in any media coverage, save for perhaps ambassadors of smaller charities there in a personal capacity at the Summit.

The numbers sampled for their views on large and small charities were both 67.

large and small charities

Paid carers and unpaid caregivers 

The major elephant in the room, or maybe more aptly put an elephant who wasn’t invited to be in the room at all, was the carers’ community.

Only recently, for example, it’s been reported from Carers UK that half of the UK’s 6.5 million carers juggle work and care – and a rising number of carers are facing the challenge of combining work with supporting a loved one with dementia. The effects of caring for a person with moderate or severe dementia are known to be substantial, encompassing a number of different domains such as personal, financial and legal. It is also known that without the army of millions of unpaid family caregivers the system of care for dementia literally would collapse.

These are the graphs for paid (upper panel) and unpaid (lower panel) carers and caregivers (n = 65 and n = 66 respectively), with the most common response being “not at all benefiting”.

caregivers

Politicians

But when asked if the politicians benefited, the result was very different.

Admittedly, few politicians were in attendance from the non-Government parties in England, and none from the main opposition party was given an opportunity to give a talk.

Both Jeremy Hunt and David Cameron gave talks. There is clearly not a lack of cross-party consensus on the importance of dementia, evidenced by the fact that the last English dementia strategy ‘Living well with dementia’ was initiated under the last government (Labour) in 2009.

The overall impression from 64 respondents to this question that politicians benefited, and some thought quite a lot.

politicians

Corporate finance A lot of discussion was about ‘investment’ for ‘innovation’ in drug research. Andrea Ponti is a highly influential man. He has been Global Co-head of Healthcare Investment Banking and Vice Chairman of Investment Banking In Europe of JPMorgan Chase & Co. since 2008. Mr. Ponti joined JPMorgan from Goldman Sachs, where he was a Partner and Co-head of European healthcare, consumer and retail investment banking, having founded the European healthcare team in 1997.

At the G8 dementia summit, Ponti advised that biotechnology and drug research can be a ‘risky’ investment for funders, rebalance of risk/reward needed. Ponti specifically made the point the rewards for investing in drug development had to be counterbalanced by the potential risks in data sharing (which are not insubstantial legally across jurisdictions because of privacy legislation).

Anyway, in summary, it was perhaps no surprise that my survey respondents felt that corporate finance were big winners of the summit (n = 65).

45

Persons with dementia And also for persons with dementia themselves?

One would have hoped that they would have been big winners according to my survey respondents, but the graph shows a totally different profile (with a minority of respondents rating that they benefited much.)

This is very sad.

66 answered this question.

The overall picture was this.

PWD1

And the breakdown of results was this.

PWD2

What will people do next?

Finally, it seemed as if the G8 Dementia Summit produced a ‘damp squib’ response with people in the majority neither more or less likely to donate to dementia charities (69%), donate to dementia care organisations (74%), get involved in befriending initiatives (72%), talk to a neighbour living with dementia or talk to a caregiver of a person living with dementia (58%), or get involved in dementia research (69%) (n varying from 73 to 78).

Limitations

Respondents were all in the UK, but the G8 dementia summit was clearly targeted in a multi-jurisdictional way.

It could be that there is huge bias in my sample, towards people more interested in care rather than Pharma. My follower list does include a significant number of people living with dementia or who have been involved in caring for people with dementia.

Conclusion

It would be interesting to know of any in-house reports from other organisations as to how they perceived they felt benefited from the G8 dementia, for example from patient representative groups, Big Pharma, carers and the medical profession. Pardon the pun, but the results taken cumulatively demonstrate a very unhealthy picture of the public’s perception in the dementia agenda in England, who calls the shots, and who benefits.

Given that this G8 dementia was to a large extent supposed to establish a multinational agenda until 2025, in parallel to the multinational nature of the response of the pharmaceutical industry, for those of us who wish to promote living well with dementia, it is clear some people are actually the problem not the solution.

This is incredibly sad for us to admit, but it’s important that we’re no longer in denial over it.

 

 

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Please take part in my survey on the G8 Dementia Summit 2013

It’s always struck me that there has never been much feedback about what the general public thought about the G8 dementia summit (“Summit”) held last year.

Information about this one-day conference is given here.

The Summit was being held at Lancaster House in London on 11 December 2013. Delegates include G8 Ministers, researchers, pharmaceutical companies and charities.

The summit aimed to agree what can be done to:

  • stimulate greater investment and innovation in dementia research
  • improve the prevention and treatment of dementia
  • improve quality of life for people with dementia

Even if you saw none of the coverage to do with this meeting, I’d be very grateful if you could complete my brief online survey about the Summit. It takes a few minutes to fill in, and contains only multiple choice questions.

ballot box

I’d be grateful if you wish to do this survey

if you’re an adult without a diagnosis of a dementia USING THIS LINK.

OR

I’d be grateful if you wish to do this survey

if you’re a person with a diagnosis of dementia, with full legal capacity USING THIS LINK.

All responses are completely anonymous.

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A consensus for high quality research into living well with dementia as well as cure is a massive step forward

It would have made a very nice narrative.

That there is a prodromal phase for Alzheimer’s disease, perhaps called mild cognitive impairment, at which point you could ‘stop dementia’ in its tracks. And anyway you would have identified individuals a long time ahead of that, with personal genomics for example.

And job done.

It all started fairly innocuously.

It all started innocuously enough

Except, it’s clearly ridiculous to scan everybody in the population in the off chance that some of them are surrepticiously developing Alzheimer’s disease. It’s also relatively impractical to stick a needle to the lumbar spine, if not contraindicated, of possible individuals. The results for cerebrospinal fluid biomarkers, brain atrophy on brain scans, and so are are desperately unsuitable for the clinic.

And it was clear from the audience of the #SDCRN that some people were not playing ball either.

But earlier in the day I’d laid into Prof John Starr had somehow collapsed the whole of living well with dementia into “non-pharmacological interventions”.

This slide had a lot of criticism

I tackled Srarr in the Q/A session over this, and cited Prof Sube Banerjee’s work in producing the 2009 English dementia strategy called ‘Living well with dementia’. Unfortunately, we “ran out of time” – but I got my reply to his reply in! #lol

But as a Cambridge graduate himself, Prof Starr was a real delight to talk with over coffee; as a Chair in Edinburgh, he knows well some of my friends, and indeed knows Prof John Hodges who kindly wrote my Foreword. We had a lovely chat anyway, and I decided we’d been talking at cross-purposes.

Anyway my political activism, somewhat crankily on behalf of people actually living with dementia, continued as the day progressed.

Indeed, today’s #SDCRN conference, the fourth annual of its kind, for the SCDRN, gave Henry Simmons, CEO of Alzheimer Scotland (@AlzScot), a chance to recapitulate on the importance of the G8 Dementia Summit, held last year in London in 2013.

This meeting was being held at the Beardmore Conference Centre, near Glasgow; so this perspective was entirely fair, given that Alzheimer Scotland have been powerful supporters of the #SDCRN.

Simmons explained how the Summit had stablished steering group with respective G8 organisations, Alzheimer’s Disease International and Alzheimer Europe.

However, after 50 years of campaigning, did Simmons feel that this was as a particularly good outcome? No.

Simmons remarked upon how there were somehow 88000 people involved with people living with dementia in Scotland, including carers and families.

I mooted over the lunch break with Dr Peter Connolly, Co-director of #SDCRN, that at least carers of people with dementia at least now ‘had a voice’. Connolly said that “they had always had a voice”.

Immediately, one can think of Thomas Whitelaw (@TommyNTour) with his turbo-charged mission to give carers a voice in Scotland.

It’s slightly out of focus, but bear with us.

Simon Denegri, @SDenegri, had earlier in the day given an outstanding talk on the need for patient involvement in influencing research policy in dementia. Simon is the Chair of INVOLVE. He is also the National Institute for Health Research (NIHR) National Director for Public Participation and Engagement in Research.

Denegri, interestingly, welcomed the appoint of Prof Martin Rossor (@martinrossor) as the Dementia Tsar for research (announcement here). I thought the substance and tone of this talk was spot on, though perhaps I would prefer to think of individuals as persons who happen to be living with a diagnosis of dementia who can become ‘patients’ within the jurisdiction of the medical profession at any time.

Simmons was blunt about the fundamental problem: that it currently takes $1 billion to take a drug to market, and there’s only a handful of drugs with limited efficacy for symptomatic treatment.

“We can’t sit back and wait for ten years.”

“We have to ensure that people living with dementia are able to live as well as possible – how he organise help and support for people currently living is as important as ever.”

Simmons’ concession that “But we’re weak at then seeing what works” I took as a fundamental concession to the idea that we also need good quality research for care too, in keeping indeed with Simon Denegri’s reference to ‘cure, care and cause‘, extended by Jess Smith (@smiththegeek), Research Communications Officer of the Alzheimer’s Society, to include ‘prevention‘.

Simmons though put it slightly more strongly, emphasising that it would be inappropriate to focus on research on cure without giving due regard to people living with, and caring for people living with, dementia. And this was a theme which Dr Peter Connolly reverted to in his summary of the whole day – that it would be now impossible to separate out the importance of any one view: cure, care, cause and prevention. The way that Connolly proposed the issue in his summary, I thought, was an effective one: that one could never dream to imagine research strategies in cancer having disproportionate areas of focus in care, cure, prevention and cause.

Clearly the news of Scotland is good, and Simmons is proud that progress has been made.

There is a National Dementia Strategy in Scotland from 2013-6In this, there is a guarantee of a minimum of one year’s post diagnostic support, from a named link worker, for every person diagnosed with dementia.  The guarantee is based on the five-pillar model developed by Alzheimer Scotland. This clearly has implications for the organisation of the integration of health and social care for England, with formulations of ‘whole person care’ edging towards a similar system with these key coordinators. For example, Serco puts quite a bit of emphasis already on a ‘care coordination centre’.

Amongst the five key challenges for Scotland, fear of dementia is mentioned as a reason for people not seeking diagnosis. Stigma is mentioned and the reluctance of some general practitioners to diagnose. Solutions are described in the form of informing people of the benefits of diagnosis and improving the quality and availability of post-diagnostic support.

I think the audience generally felt we needed to talk openly about stigma, and Dr Peter Gordon (@PeterDLROW) cast the net wider to say that we ought to be careful about language full stop.

I’ve begun to think that the term ‘dementia friendly communities’ can at worst encourage division:

but I met a guy called Hugh whose late wife had been living with dementia for eight years. He was passionate about being a ‘Dementia Friend’, and was indeed extremely proud of the work being done in his community.

There were many aspects of Simmons’ speech which reflected my overwhelming philosophy of ‘Living well with dementia’, on which I have written a whole book recently, evaluating critically the underlying evidence base for this jurisdiction – but in a suitable manner for an interested and informed member of the general public. Simmons at that point raised a point that no-one can fundamentally can disagree with the fact people with dementia need information to be able to exert choice and control, or to live in supportive communities. I agree with Simmons, as indeed I have devoted two whole chapters to these policy planks in my book.

Simmons also described the correct view, in my view, that persons with dementia need to be engaged with the system far before a “crisis” occurs. The evidence appears to suggest that it might be possible to prevent unnecessary hospital admissions of people living with dementia. This is definitely a phenomenon which we have been experiencing too in acute medicine in England (with a large proportion of the acute medical take having a comorbidity of dementia). But Simmons also warned, correctly, that, as the persons’ needs for living well with dementia changes, we need to make sure that their solutions for living well adapt.

Simmons then put a slide which interested me, as it fundamentally reflects the ethos of my book, of persons interacting with their environment. I still have concerns about the word ‘care’ as it implies some sort of transaction potentially, and I prefer the notion of ‘shared care’ of people with dementia being at the heart of decisions when they legally have the capacity to do so.

Critical to this is the “dementia practice coordinator” in the “eight pillars of community support“, but again Simmons conceded “we need to know what works and what doesn’t care: it needs to be more than basic social care and support.”

8 pillars

Simmons made quite a big thrust of his thesis that we need highly quality research to inform on integrated care (between health and social care systems), and implied that the current systems were a long way from that. It is likely an incoming government both in England and in Scotland will be publicly opposed to social cuts, whilst carrying them out in some form, while promoting personalised care (and possibly personal budgets). But Simmons view that there needs to be good quality researching care is borne out by other stakeholders too, and, despite the stated aims of the G8 dementia Summit, a collective opinion may be slowly crystallising.

You see, under this system and “whole person care” which will be left for a future UK Labour government to introduce, I view the person with dementia always to have the philosophy of ‘living well’ right behind them – and they truly become a patient when they fall ill, and then become under the jurisdiction of the medical profession which I think still has much to learn about the dementias.

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I intend to promote the need of high quality wellbeing research at the SDCRN 4th Annual Conference on dementia in Glasgow today

This is the programme for today which I’m looking to enormously today.

I will be promoting heavily the cause of living well with dementia, to swing the pendulum away from pumping all the money into clinical trials into drug trials for medications which thus far have had nasty side effects.

In keeping with this, I have been given kind permission to give out my G8 Dementia Summit questionnaire to look at delegates’ perception of what this conference was actually about.

We need also not to lose sight of the current persons with dementia, to ensure that they have good outcomes in the wellbeing.

This can be achieved through proper design of care environments, access to innovations including assistive technology, meaningful communities and networks for people with dementia to be part of and to lead in, and proper access to advocacy support services and information which empower choice and control.

There’s a lot to do here – and we need to have high quality research into all of this arm of research too.

Coming back home to Scotland is like travelling back in time for me.

I was born in Glasgow on June 18th 1974, and my lasting memory of leaving Glasgow for London 37 years ago was how relatively unfriendly Londoners were in comparison.

Of course the train journey through the beautiful England-Scottish border countryside brought it back to me. There’s a lot to be said for getting out of London. It’s an honour to be here back in Scotland.

My book ‘Living well with dementia’ is here.

Contents

Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia •  Dementia-friendly communities and living well with dementia • Conclusion

Reviews

Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’
Professor John R Hodges, in his Foreword

‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’ –Sally-Ann Marciano, in her Foreword

Book cover

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An analysis of 75 English language web articles on the G8 dementia summit

Background

Experience has suggested that academic scientists can be as ‘guilty’ as the popular press in generating a ‘moral panic’ causing mass anxiety and hysteria. Take for example the media reporting of the new variant Creuztfeld-Jacob disease, a very rare yet important cause of dementia (Fitzpatrick, 1996).

How dementia is represented in the media is a good surrogate market of how the issue can be represented in certain segments of the culture of a society (Zeilig, 2014).

According to George, Whitehouse and Ballenger (2011), the concept of dementia, a term which they attribute to Celsus in the first century A.D. — has long carried “social implications for those so diagnosed and has been associated with reduced civilian and legal competence, as well as with entitlement to support and protection.

A range of emotionally charged metaphors about dementia pervades the popular imagination, and these are found in newspaper accounts, political speeches, and in both documentary and feature films. The ‘G8 dementia’ summit allowed many of these recurrent motifs to resurface unchallenged.

I’ve been intrigued how the G8 Dementia Summit was covered in the English-speaking media on the web. So I did a Google search for “G8 dementia”, on the UK Google site. It only came up with languages in English article, and I included the top 75 search results.

I excluded some search results. I excluded webpages consisting of only videos. Flickr photos or Pinterest boards. I decided to exclude articles less than 100 words long.

Aim

The aim of this piece of work was to complete a preliminary exploration of how the #G8dementia summit was reported on the internet in the English language.

The literature in this field is very small, and no study to my knowledge has ever been undertaken for the actual reporting of the G8 dementia summit which was unprecedented.

Methods

For the text analysis, done online using this tool, I excluded the author names, titles, location of authorship of the article (e.g. London). also excluded the endings, invariably, “Read more” “You may also like”, “You can read more about” and list of other ‘links’ to look at. I excluded duplicates. Finally, one article which was largely a compilation of tweets was excluded.

Results

Unsurprisingly, the word “dementia”  featured 955 times, but encouragingly “people” featured 280 times. I found this quite gratifying as I have just published a book on the rôle of the person and the environment for living well with dementia – though the vast majority of articles did not have wellbeing as their main thrust.

Wordie

I think the problem in English policy is revealed in the finding that “research” appears 334 times, and yet “wellbeing” is there fewer than eight times. The facts that “data” is used thirty times, with “collaboration” 28 times, hint at the overall drive towards data sharing for the development of cross-country trials and personalised medicine.

There seems to be a greater need for “funding” somewhere, a word used 66 times. There’s clearly an “international” focus, a word used 103 times.

The word “carers” was only used thirty times – a bit of a knee in the groin for the caring community?

The term “social care” is used 14 times across the 75 articles, but this is dwarfed by the use of the term “innovation” used 37 times. “Innovation” is of course a key meme of Big Pharma, as demonstrated by this infographic by Eli Lilly, a prominent company in dementia neuropharmacology.

TTIP

The ideological bias towards the medical model for dementia is reflected in the frequency of the word “disease” or “diseases”, totalling 203; “treatment” or “treatments”, totalling 91; and “cure” or “cures”, totalling 72.

There’s clearly a bias towards Alzheimer’s disease, in that “Alzheimer” was used 145 times, with the word “vascular” used only six times. Strikingly, no other forms of dementia were mentioned. There are probably about a hundred known forms of diagnoses comprising the dementias, including some very common ones such as “frontotemporal” or “diffuse Lewy Body”.

Various authors, including Kate Swaffer who lives with a dementia herself, have often remarked on this bias known in the literature as “Alzheimerisation” (Swaffer, 2012).

“Cameron” is mentioned 60 times, and “Hunt” is mentioned 24 times. “Hughes”, as in Jeremy Hughes, CEO of the Alzheimer’s Society, is only mentioned 5 times.

It’s also interesting to see which other conditions are mentioned alongside dementia in these 75 articles. Only three were, in fact: these are “cancer” (45 times), HIV (25 times) and AIDS (29 times); treating HIV and AIDS as distinct, which is of course is not necessary to do, and there may have been no intention on the part of the journalists to use these words specifically in their narratives.

Thankfully, the usual dramatic terms were not used often.

“Timebomb” was only twice – once by the BBC

“It also called on the World Health Organization to identify dementia as “an increasing threat to global health” and to help countries adapt to the dementia timebomb.
[http://www.bbc.co.uk/news/health-25318194]

and then by a blog for the “Humanitarian Centre:

“Dementia has been branded a ‘timebomb’, as ageing populations will exacerbate the problems and costs associated with dementia.”
[http://www.humanitariancentre.org/2014/01/tackling-dementia-the-g8-dementia-summit-2]

The terms “bomb” or “bombs” were only used four times, and encouraging one of these was complaining about in a passage complaining about military metaphors.

“To make matters worse people living with dementia were exposed to scaremongering rhetoric. We already know that people living with dementia are directly affected by stereotypes and negative attitudes to dementia. The widespread use of military style metaphors – time bombs, battles, victims and fights in addition to media promotion of the term ‘suffering from dementia’ combine to increase fear of the disease for those living with it. This fear exacerbates the isolation and exclusion that people with dementia often feel following diagnosis.”
[http://www.centreforwelfarereform.org/library/by-date/g8-dementia-summit.html]

The dementia “time bomb” crops up frequently in U.K. broadsheets (Furness, 2012) and tabloids. Time bombs are devices that could go off at any time; their most common use has been in politically motivated terrorism. The association of dementia with terrorist tactics is fascinating, invoking the sense of a threat

The only use of the word “tide” was in a direct quotation from a speech by Jeremy Hunt, current Secretary of State for Health:

“We have turned the global tide in the battle against AIDS. Now we need to do it again. We will bankrupt our healthcare systems if we don’t,” he said.”
[http://www.reuters.com/article/2013/12/11/us-dementia-g-idUSBRE9BA0HE20131211]

The danger of flooding has long been associated with dementia. A 1982 U.K. report was entitled: “The rising tide: Developing services for mental illness in old age” (Arie and Jolley, 1983).

Note Hunt’s ‘wordie’ contains ‘heartache’, ‘threats’, ‘battle’, ‘dreading’, ‘stigma’ and ‘fight’, but also includes ‘diagnosis’, ‘people’ and ‘research’.

Jeremy Hunt's wordie

It is indeed fascinating the on-running theme of promoting dementia research in the absence of a context of wellbeing.

David Cameron’s ‘Wordie’ is quite tame.

Cameron wordie

But the consequences for this media messaging are potentially quite profound.

Limitations

There is a sample bias introduced with how Google orders its ranking.

Page ranking is not only calculated on the basis of traffic, but also in terms of degree of linkage with other websites.

It is possible that higher ranking articles, particularly online versions of newspaper articles, have a common root such as the Press Association, leading to a lack of independence amongst authors in their coverage of the Summit.

Conclusion

Whitehouse concludes a recent abstract as follows:

“Creating a more optimistic future will depend less on genetic and reductionist approaches and more on environmental and intergenerative approaches that will aid in recalibrating the study of AD from an almost exclusive focus on biochemical, molecular and genetic aspects to better encompass ‘‘real world’’ ecological and psychosocial models of health.”

Encouragingly though the frequency of words such as ‘timebomb’ and ‘flood’ were not as much as one might have feared, from the (albeit small) literature in this field.

If you assume that the 75 articles form a representative cohort of copy on the G8 dementia summit, the picture presented has a clear emphasis on a magic pharmacological bullet for dementia. The copy represents not a balanced debate, on behalf of all stakeholders, but reads like a business case to invest more in neuropharmacological-based research into dementia.

References

Arie, T., & Jolley, D. (1983). The rising tide. British Medical Journal, 286, 325–326.

Fitzpatrick, M. (1996) Creutzfeldt-Jakob disease and bovine spongiform encephalopathy, BMJ, 312, 1037.3.

George, D.R., Whitehouse, P.J., Ballenger, J. (2011) The evolving classification of dementia: placing the DSM-V in a meaningful historical and cultural context and pondering the future of “Alzheimer’s”, Cult Med Psychiatry. 2011 Sep;35(3):417-35.

Furness, H. (2012, March 7). Dementia is ‘next global health time bomb.’ The Telegraph. Retrieved from http://www.telegraph.co.uk/health/healthnews/9127801/Dementia-is-next-global-health-time-bomb.html

Swaffer, K. (2012) Dementia, denial, old age and dying, blogpost here.

Whitehouse, P.J. (2014) The end of Alzheimer’s disease-From biochemical pharmacology to ecopsychosociology: A personal perspective. Biochem Pharmacol. 2014 Apr 15;88(4):677-681. doi: 10.1016/j.bcp.2013.11.017.

Zeilig H. (2014) Dementia as a cultural metaphor, Gerontologist, 54(2), pp. 258-67.

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US subcommittee perspective on the G8 Dementia Summit

It’s worth watching this video from thirty minutes in.

This video was originally streamed live on Jan 15, 2014 as, “Subcommittee Hearing: A Report on the G-8 Dementia Summit”

Details: Subcommittee on Africa, Global Health, Global Human Rights, and International Organizations | 2200 House Rayburn Office Building Washington, DC 20515 | Jan 15, 2014 2:00pm

This video discusses the potential for international collaboration in work on dementia, given regional disparities on ‘surveillance’ of dementia.

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Can you steal Big Data for dementia research like a Big Mango?

A ‘Big Mango’ has just gone missing, but will people notice if Big Data suddenly goes missing for the purposes of research into dementia?

A large ceramic mango is of course tangible property, whereas the information itself of ‘Big Data’ isn’t. But the recent furore over ‘caredata’ has illustrated how meticulously careful if you have to be about consent.

Twitter is amazing.

During infectious disease outbreaks, data collected through health institutions and official reporting structures may not be available for weeks, hindering early epidemiologic assessment.

In contrast, data from informal media are typically available in near real-time and could provide earlier estimates of epidemic dynamics. Many people for ‘breaking news’ nowadays prefer to do a Twitter search than wait for a news bulletin.

Rumi Chanara and colleagues (Chanara et al., 2012) assessed correlation of volume of cholera-related HealthMap news media reports, Twitter postings, and government cholera cases reported in the first 100 days of the 2010 Haitian cholera outbreak.

Trends in volume of informal sources significantly correlated in time with official case data and was available up to 2 weeks earlier. They found that informal data can be used complementarily with official data in an outbreak setting to get timely estimates of disease dynamics.

The English law does pride itself, however, on some sort of law on the protection of information (hence the enactment of the Data Protection Act 1998).

Long before that, Oxford v Moss (1979) 68 Cr App Rep 183 was an English criminal law case, dealing with theft, intangible property and information. The court ruled that information could not be deemed to be intangible property and therefore was incapable of being stolen within the Theft Act 1968.

The defendant, Moss, was a University student and managed to obtain a proof copy of his forthcoming exam paper. It was accepted that he always intended to return the proof itself, and therefore could not be convicted of theft of the proof itself, however he was charged with stealing information belonging to the Senate of the University.

How confidential medical data are dealt with has been cause for a broohaha recently.

Informed consent is an ‘opt-in‘ model:people have to sign up to donate organs. In this model, donors must also be made aware of what they are signing up for and have the option of withdrawing their consent at any point.

Informed consent contrasts with presumed consent (used in association with organ donation, the assumption that an individual is happy to donate organs after death unless he or she has explicitly said that they do not wish to).

At the beginning of February 2014, it was reported that the Information Commissioner’s Office had been concerned that the information provided to patients on care.data is not clear enough about how to opt out of the programme.

According to Prof Brian Jarman, an expert statistician whose interests data and public health, the arrangements concerning ‘caredata’ do not sound like informed consent.

“The Data Protection Act (DPA) usually requires organisations by default to offer opt-in. Yet for the confidential care.data opt-out is the only option. This suggests a lack of informed consent. The leaflet sent to people in their junk mail gives little information about the drawbacks. To have informed consent patients need to be told of the risks as well as the benefits.”

This was a bit of a public grab, but possibly competing in publicity with the latest finding that thieves have just made off with a 10 metre high, 10 tonne mango replica from a town in northern Queensland, Australia.

A crane was used to rip the three-storey giant fruit from the concrete platform on which it had stood since 2002.

Just as people are now vigilant about the theft of giant mangos, the theft of Big Data has come under justifiable scrutiny.

Already there has been the massive plastic card data theft in South Korea, affecting about 60 million cards; the Target Corp. credit card disaster involving up to 40 million customers; the hacking of 16 million German e-mail accounts; data securitybreaches at Nieman Marcus Inc. and Easton-Bell Sports Inc.; and a group of Russian hackers who compromised the computer systems of Western energy and defense companies, governments, and academic institutions.

Cybercriminals, of course, abuse less obvious vulnerabilities, such as those in site-building software. In these cases, they often buy malware rather than develop it themselves.A specialised field, the grab of Big Data has particular relevance to people worried about hackers of a giant database of NHS clinical data.

So are Big Data important? An article in Wired Magazine “The End of Theory: The Data Deluge Makes the Scientific Method Obsolete ” cited provocatively that, “All models are wrong, but some are useful.”

So proclaimed statistician George Box 30 years ag.

In this article, it was stated that the scientific method is built around testable hypotheses but some  of the models have not actually been that good, in comparison with real data.

Mendel and Newton are cited.

According to McKinseys, the amount of data in our world has been exploding, and analyzing large data sets—so-called big data—”will become a key basis of competition, underpinning new waves of productivity growth, innovation, and consumer surplus”.

In October 2012, it was reported that Massachusetts General Hospital would receive $5.4 million from the nonprofit Cure Alzheimer’s Fund, in what the fund said was the largest single private scientific grant ever invested in Alzheimer’s whole-genome sequencing.

The Alzheimer’s Genome Project would obtain complete genomic sequences of more than 1,500 patients in families that have Alzheimer’s, and will include over 100 brain samples. The genomes of family members with Alzheimer’s will be compared to those members who have been spared the disease to identify sites in the genome that influence risk for Alzheimer’s.

And it does seem as if people are generally moving with the times,.

In January 2014,  for the “Nuffield Council on Bioethics: The linking and use of biological and health data” a response by the Wellcome Trust from January 2014 provided a number of interesting points.

“The linking and use of biological and health data is central to a wide range of biomedical research. There is a strong need to ensure a legal and regulatory environment in which these data can be used and linked for the purposes of research that aims towards improving health.”

However, the following was also noted.

“There are legitimate ethical concerns about the privacy implications of the use and linking of such data and future developments in using these data cannot necessarily be anticipated. Participants’ wishes are paramount, and there is a need for strong governance mechanisms for the use of participant data in research that can appropriately protect participant confidentiality.”

Google Health had to give up, however, with their initiative:

“Now, with a few years of experience, we’ve observed that Google Health is not having the broad impact that we hoped it would. There has been adoption among certain groups of users like tech-savvy patients and their caregivers, and more recently fitness and wellness enthusiasts. But we haven’t found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people.”

Of course the grab of a giant mango can only put down to a publicity stunt; sharing of data for the public good in no way constitutes theft if done with the informed consent of people involved, although regulators have ingenious ways of making certain things permissible as they wish.

Stealing a giant mango is hardly likely to be legislated for in the near future, however.

4-Vs-of-big-data

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On international collaborative data sharing and dementia. Surely "it's good to talk"?

Plans to harvest private data from patients’ NHS files are causing a ‘crisis of public confidence’, the Royal College of GPs said this week. The professional body said it was ‘very worried’ that the public had not been properly informed about the scheme, which is due to begin this spring. Conversely, NHS managers and public health experts say the data will be used for important research and to show up poor care – and that all the data will be made anonymous. But other experts, in information security, say patients will be identifiable from their data – which will be passed on to private companies including insurance firms, and the professional regulatory code for ethics puts valid informed consent as of prime importance.  A growing number of GPs oppose the care.data scheme, and say their patients will refuse to give them information for fear it will be harvested.

In the actual Communiqué from the G8 dementia Conference, the drive of sharing of “Big Data” was formally acknowledged. In the actual webinar, there was in fact screening of a session by corporate investors on the need to minimise risk from their investments to have the regulatory framework in place to avoid concerns over international data sharing.

Big Data

Indeed, BT have taken active interest in dementia.

This eye catching headline is from the BT website:grasp:

This report cites that, “the goal of finding a treatment to cure or halt dementia by 2025 is “within our grasp”, Prime Minister David Cameron has said, as he announced a doubling in UK funding for research into the disease.”

“The London conference is expected to agree to a package of measures on international information-sharing and collaboration in research. ”

These concerns include data privacy and security, and curiously do not feature above.

But the report does not even mention BT’s own Paul Litchfield, who presented even in the G8 Summit.

Last year, leaders from MedRed and BT were invited by the White House Office of Science and Technology Policy to unveil their new collaboration, the MedRed BT Health Cloud (MBHC), at “Data to Knowledge to Action: Building New Partnerships,” an event held at the Ronald Reagan Building 1300 Pennsylvania Ave NW in Washington, DC, on November 12, 2013.

MBHC is a multiyear, transatlantic effort to make available one of the largest open health data repositories in the world. It has been recognized by the Obama Administration as a high-impact collaboration that supports the Big Data Research and Development Initiative.

Designed to meet the converging needs of the life sciences and healthcare industries, the MedRed BT Health Cloud seeks to enhance integration of U.S. public data sets, such as adverse event reporting data from the U.S. Food and Drug Administration and recently released Medicare data from the Centers for Medicare and Medicaid Services, with data from the UK’s NHS and ‘other healthcare systems’.

Data currently available through the system includes several years of deidentified population health data from England, Scotland and Wales, as well as hundreds of other U.K. and data sources. It features data such as physician encounters, acute care interventions, pharmacy history, and health outcomes data.

It is argued that integration of this data with U.S. data and the addition of advanced analytics hold great potential to help speed the development of products and practices that will advance healthcare and improve the health and well-being of people around the world.

The drive for collaboration in data sharing to find a cure for dementia, most agree, is  a worthy policy concern, but so is the current lack of openness in clinical data sharing which has brought about an overwhelming feeling of avoidable mistrust in the public.

The ultimate goal is the use of genomic DNA information for the development of personalised medicine.

A study testing all the DNA in the genome of cancer cells, the first of its kind reported on 7 Februrdy 2014,  has identified individuals that may benefit from new treatments currently being tested in clinical trials.

Metastatic cancer – cancer that has spread from the region of the body where it first started, to other areas – is generally regarded as being incurable. In 2013, 39,620 women died from metastatic breast cancer in the US.

Progress in developing effective new chemotherapy or hormonal therapies for metastatic cancer has been slow, though there have been developments in therapies targeting specific genetic mutations in breast cancer.

We’ve all been shown Facebook adverts containing highly focused suggestions for purchases known on our known habits.

McKinseys have high hopes for the future of Big Data, indeed.

“Patients are identified to enroll in clinical trials based on more sources—for example, social media—than doctors’ visits. Furthermore, the criteria for including patients in a trial could take significantly more factors (for instance, genetic information) into account to target specific populations, thereby enabling trials that are smaller, shorter, less expensive, and more powerful.”

Of course, widespread internet access is an essential part of this technological revolution.

As regards BT, data sharing and dementia, surely it’s “good to talk” with the public who are, after all, central stakeholders?

Somebody had better tell Sid.

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