Category Archives: engagement

#caredata, care.data, change, change management, confidentiality, empowerment, engagement, NHSEngland, scope, scope creep, SCR, transparency

care.data – “anticipating things to come” means confidence by design

“By creating these coloured paper cut-outs, it seems to me that I am happily anticipating things to come…I know that it will only be much later that people will realise to what extent the work I am doing today is in step with the future.” Henri Matisse (1869-1954) [1]
My thoughts on the care.data advisory event Saturday September 6th.  “Minority voices, the need for confidentiality and anticipating the future.”

Part one here>> Minority voices

This is Part two >> the need for confidentiality and anticipating the future.”

[Video in full > here. Well worth a viewing.]

Matisse – The cut outs

Matisse when he could no longer paint, took to cutting shapes from coloured paper and pinning them to the walls of his home. To start with, he found the process deeply unsatisfying. He felt it wasn’t right. Initially, he was often unsure what he would make from a sheet. He pinned cutouts to his walls. But tacking things on as an afterthought, rearranging them superficially was never as successful as getting it right from the start. As he became more proficient, he would cut a form out in one piece, from start to finish. He could visualise the finished piece before he started. His later work is very impressive, much more so in real life than on  screen or poster. His cut outs took on life and movement, fronds would hang in the air, multiple pieces which matched up were grouped into large scale collections of pieces on his walls. They became no longer just 2D shapes but 3D and complete pictures. They would tell a joined-up story, just as our flat 2D pieces of individual data will tell others the story of our colourful 3D lives once they are matched and grouped together in longitudinal patient tracking from cradle to grave.

Data Confidentiality is not a luxury

From the care.data advisory meeting on September 6th, I picked out the minority voices I think we need to address better.

In addition to the minority groups, there are also cases in which privacy, for both children and adults, is more important to an individual than many of us consider in the usual discussion. For those at risk in domestic violence the ability to keep private information confidential is vital. In the cases when this fails the consequences can be terrible. My local news  told this week of just such a woman and child whose privacy were compromised.

“It is understood that the girl’s mother had moved away to escape domestic violence and that her ex-partner had discovered her new address.” (Guardian, Sept 12th)

This story has saddened me greatly.  This could have been one of my children or their classmates.

These are known issues when considering data protection, and for example are addressed in the RCGP Online Roadmap (see Box 9, p20).

“Mitigation against coercion may not have a clear solution. Domestic violence and cyberstalking by the abuser are particularly prevalent issues.”

Systems and processes can design in good privacy, or poor privacy, but the human role is a key part of the process, as human error can be the weakest link in the security chain.

Yet as regards care.data, I’ve yet to hear much mention of preventative steps in place, except an opt out. We don’t know how many people at local commissioning levels will access how much of our data and how often. This may go to show why I still have so many questions how the opt out will work in practice, [5] and why it matters. It’s not a luxury, it can be vital to an individual. How much of a difference in safety, is achieved using identifiable vs pseudonymised data, compared with real individual risk or fear?


“The British Crime Survey (BCS) findings of stalking prevalence (highest estimate: 22% lifetime, 7% in the past year) give a 5.5% lifetime risk of interference with online medical records by a partner, and a 1.75% annual risk.”
This Online Access is for direct care use. There is a greater visible benefit for the individual to access their own data than in care.data, for secondary uses. But I’m starting to wonder, if in fact care.data is just one great big pot of data and the uses will be finalised later?Is this why scope is so hard to pin down?


The slides of who will use care.data included ‘the patient’ at this 6th September meeting. How, and why? I want to have the following  explained to me, because I think it’s fundamental to opt out. This is detailed, I warn you now, but I think really important:

How does the system use the Opt out?

If you imagine different users looking at the same item of data in any one record, let’s say prescribing history, then it’s the security role and how the opt out codes work which will determine who gets to see what.



I assume here, there are not multiple copies of “my medications” in my record.  The whole point of giant databases is real-time, synched data, so “my medications” will not be stored in one place in the Summary Care Record (SCR) and copied again in ‘care.data’ and a third time in my ‘Electronic Prescription Service (EPS). There will be one place in which “my medications” is recorded.


The label under which a user can see that data for me, is their security role, but to me largely irrelevant. Except for opt out.


I have questions: If I opt out of the SCR programme at my GP, but opt in at my pharmacy to the EPS, what have I opted in to? Who has permission to view “my medications”  in my core record now? Have I created in effect an SCR, without realising it?


[I realise these are detailed questions, but ones we need to ask if we are to understand and inform our decision, especially if we have responsibility for the care of others.]


If I want to permit the use of my record for direct care (SCR) but not secondary uses (care.data) how do the two opt outs work together,  and what about my other hospital information?


Do we understand what we have and have not given permission for and to whom?
If there’s only one record, but multiple layers of user access who get to see it,  how will those be built, and where is the overlap?
We should ask these questions on behalf of others, because these under represented groups and minorities cannot if they are not in the room.

Sometimes we all need privacy. What is it worth?

Individuals and minorities in our community may feel strongly about maintaining privacy, for reasons of discrimination, or of being ‘found out’ through a system which can trace them. For reasons of fear. Others can’t always see the reasons for it, but that doesn’t take away from the value it has for the person who wants it or their need for that human right to be respected. How much is it worth?

It seems the more we value keeping data private, the more the cash value it has for others. In 2013, the FT created a nifty calculator and in an interview with Dave Morgan, reckoned our individual data is worth less than $1. General details such as age, gender and location are in the many decimal place range of fractions of a cent. The more interesting your life events, the more you can add to your data’s total value. Take pregnancy as an example.  Or if you add genomic data it  goes up in market value again.

Whilst this data may on a spreadsheet be no more than a dollar amount, in real life it may have immeasurably greater value to us on which you cannot put a price tag. It may be part of our life we do not wish others to see into. We may have personal or medical data, or recorded experiences we simply do not want to share with anyone but our GP. We might want a layered option like this suggestion by medConfidential to allow some uses but not others. [6]

In this debate it is rare that we mention the PDS (Personal Demographic Service), which holds the name and core contact details of every person with and NHS number past and present, almost 80 million. This is what can compromise privacy, when the patient can be looked up by any A&E, everyone with Summary Care Record access on N3 with technical ability to do so. It is a weak link. The security system relies on human validations, effectively in audit ‘does this seem OK to have looked up?’  These things happen and can go unchecked for a long period without being traced.

Systems and processes on this scale need security designed, that scales up to match in size.

Can data be included but not cut out privacy?

Will the richness of GP record / care.data datasharing afford these individuals the level of privacy they want? If properly anonymised, it would go some way to permitting groups to feel they could stay opted in, and the data quality and completeness would be better. But the way it is now, they may feel the risks created by removing their privacy are too great. The care.data breadth and data quality will suffer as a consequence.

The requirement of care.data to share identifiable information we may not want to, and that it is an assumed right of others to do so, with an assumed exploitation for the benefit of UK plc, especially if an opt-out system proceeds, feels to many, an invasion of the individual’s privacy and right to confidentiality. It can have real personal consequences for the individual.

The right to be open, honest and trusting without fear of repercussion matters. It matters to a traveller or to someone fleeing domestic violence with fears of being traced. It matters to someone of transgender, and others who want to live without stigma. It matters to our young people.

The BMA recognised this with their vote for an opt-in system earlier this year. 

Quality & Confidence by Design

My favourite exhibition piece at Tate Britain is still Barbara Hepworth’s [3] Pelagos from 1946. It is artistically well reviewed but even if you know little of art, it is simply a beautiful thing to see. (You’re not allowed to touch, even though it really should be, and it makes you want to.) Carved from a single piece of wood, designed with movement, shape, colour and shadow. It contains a section of strings, a symbol of interconnectivity. (Barbara Hepworth: Pelagos[4]). Seen as a precious and valuable collection, the Hepworth room has its own guard and solid walls. As much as I would have liked to take pictures, photography was not permitted and natural light was too low. Visitors must respect that.

So too, I see the system design needs of good tech. Set in and produced in a changing landscape. Designed with the view in mind of how it will look completed, and fully designed before the build began, but with flexibility built in. Planned interconnectivity. Precise and professional. Accurate. And the ability to see the whole from the start. Once finished, it is kept securely, with physical as well as system-designed security features.

All these are attributes which care.data failed to present from its conception but appear to be in progress of development through the Health and Social Care Information Centre. Plans are in progress [6] following the Partridge Review, and were released on September 3rd, with forward looking dates. For example, a first wave of audits is scheduled for completion 1/09 for four organisations. HSCIC will ‘pursue a technical solution to allow data access, w/out need to release data out to external orgs. Due 30/11.’ These steps are playing catch up, with what should have been good governance practices and procedures in the past. It need not be this way for GP care.data if we know that design is right, from the start.

As I raised on Saturday, at the Sept 6th workshop advisory committee, and others will no doubt have done before me, this designing from the start matters.  Design for change of scope, and incorporating that into the communications process for the future is vital for the pathfinders. One thing will be certain for pathfinder practices, there will be future changes.

This wave of care.data is only one step along a broad and long data sharing path

To be the best of its kind, care.data must create confidence by design, build-in the solutions to all these questions which have been and continue to be asked. We should be able to see today the plans for what care.data is intended to be when finished, and design the best practices into the structure from the start. Scope is still a large part of that open question. Scope content, future plans, and how the future project will manage its change processes.

As with Matisse, we must ask the designers, planners and comms/intelligence and PR teams, please think ahead  ”anticipating things to come”. Then we can be confident that we’ve  something fit for the time we’re in, and all of our kids’ futures. Whether they’ll be travellers, trans, have disabilities, be in care or not.  For our majority and all our minorities. We need to build a system that serves all of the society we want to see. Not only the ‘easy-to-reach’ parts.

”Anticipating things to come” can mean anticipating problems early, so that costly mistakes can be avoided.

Anticipating the future

One must keep looking to design not for the ‘now’ but for tomorrow. Management of future change, scope and communication is vital to get right.

This is as much a change process as a technical implementation project. In fact, it is perhaps more about the transformation, as it is called at NHS England, than the technology.The NHS landscape is changing – who will deliver our healthcare. And the how is changing too, as telecare and ever more apps are rolled out. Nothing is constant, but change. How do we ensure everyone involved in top-down IT projects understands how the system supports, but does not drive change? Change is about process and people. The system is a tool to enable people. The system is not the goal.

We need to work today to be ahead of the next step for the future. We must ensure that processes and technology, the way we do things and the tools that enable what we do, are designing the very best practices into the whole, from the very beginning. From the ground up. Taking into account fair processing of Data Protection Law, EU law – the upcoming changes in EU data protection law –  and best practice. Don’t rush to bend a future law in current design or take a short cut in security for the sake of speed. Those best practices need not cut out the good ethics of consent and confidentiality. They can co-exist with world class research and data management. They just need included by design, not tacked on, and superficially rearranged afterwards.

So here’s my set of challenge scenarios for NHS England to answer.

1. The integration of health and social care marches on at a pace, and the systems and its users are to follow suit. How is NHS England ensuring the building of a system and processes  which are ‘anticipating by design’ these new models of data management for this type of care delivery, not staying stuck on the model of top-down mass surveillance database, planned for the last decade?

2. How will NHS England audit that a system check does not replace qualified staff decisions, with algorithms and flags for example, on a social care record? Risk averse, I fear that the system will encourage staff to be less likely to make a decision that goes against the system recommendation, ‘for child removal’, for example. Even though their judgement based on human experience, may suggest a different outcome. What are the system-built-in assumed outcomes – if you view the new social care promotional videos at least it’s pretty consistent. The most depressing stereo typed scenarios I’ve seen anywhere I think. How will this increase in data and sharing, work?

“What makes more data by volume, equal more intelligence by default?”

Just like GP call centre OOH today, sends too many people calling the 111 service to A&E now, I wonder if a highly systemised social care system risks sending too many children from A&E into social care? Children who should not be there but who meet the criteria set by insensitive algorithms or the converse risk that don’t, and get missed by over reliance on a system, missing what an experienced professional can spot.

3. How will the users of the system use their system data, and how has it been tested and likely outcomes measured against current data? i.e. will more or fewer children taken into care be seen as a measure of success? How will any system sharing be audited in governance and with what oversight in future?

Children’s social care is not a system that is doing well as it is today, by many accounts, you only need glance at the news most days, but integration will change how is it delivers service for the needs of our young people. It is an example we can apply in many other cases.

What plan is in place to manage these changes of process and system use? Where is public transparency?

care.data has to build in consent, security and transparency from the start, because it’s a long journey ahead, as data is to be added incrementally over time. As our NHS and social care organisational models are changing, how are we ensuring confidentiality and quality built-in-by-design to our new health and social care data sharing processes?

What is set up now, must be set up fit for the future.

Tacking things on afterwards, means lowering your chance of success.

Matisse knew, “”Anticipating things to come” can mean being positively in step with the future by the time it was needed. By anticipating problems early, costly mistakes can be avoided.”

*****

Immediate information and support for women experiencing domestic violence: National Domestic Violence, Freephone Helpline 0808 2000 247

*****

[1] Interested in a glimpse into the Matisse exhibition which has now closed? Check out this film.

[2] Previous post: My six month pause round up [part one] https://jenpersson.com/care-data-pause-six-months-on/

[3] Privacy and Prejudice: http://www.raeng.org.uk/publications/reports/privacy-and-prejudice-views This study was conducted by The Royal Academy of Engineering (the Academy) and Laura Grant Associates and was made possible by a partnership with the YTouring Theatre Company, support from Central YMCA, and funding from the Wellcome Trust and three of the Research Councils (Engineering and Physical and Sciences Research Council; Economic and Social Research Council and Medical Research Council).

[4]  Barbara Hepworth – Pelagos – in Prospect Magazine

[5] Questions remain open on how opt out works with identifiable vs pseudonymous data sharing requirement and what the objection really offers. [ref: Article by Tim Kelsey in Prospect Magazine 2009 “Long Live the Database State.”]
[6] HSCIC current actions published with Board minutes
[8] NIB https://app.box.com/s/aq33ejw29tp34i99moam/1/2236557895/19347602687/1
*****

More information about the Advisory Group is here: http://www.england.nhs.uk/ourwork/tsd/ad-grp/

More about the care.data programme here at HSCIC – there is an NHS England site too, but I think the HSCIC is cleaner and more useful: http://www.hscic.gov.uk/article/3525/Caredata

 

#caredata, care.data, change management, commercial, engagement, genomics, health, HES, leadership, NHSEngland, politics, privacy, research, trust

Launching genomics, lifeboats, & care.data [part 2]

“On Friday 1st August the media reported the next giant leap in the genomics programme in England, suggesting the 100K Genomics Project news was akin to Kennedy launching the Space Race. [1] [from 2:46.30].”

[Part one of this post is in this link, and includes thinking about care.data & genomics interaction].

Part two:

What is the expectation beyond 2017?

The investment to date may seem vast if, like me, you are unfamiliar with the amounts of money that are spent in research [in 2011 an £800M announcement, last summer £90M in Oxford as just two examples], and Friday revealed yet more money, a new £300M research package.  It is complex how it all adds up, and from mixed sourcing. But the stated aim of the investment is relatively simple: the whole genomes of 75,000 people [40K patients and 35K healthy relatives] are to be mapped by 2017.

Where the boundary lies between participation for clinical care and for research is less clear in the media presentation. If indeed participants’ results will be fed back into their NHS care pathway,  then both aims seem to be the intent of the current wave of participants.

It remains therefore perhaps unclear, how this new offering interacts with the existing NHS genetic services for direct clinical care, or the other research projects such as the UK Biobank for example, particularly when aims appear to overlap:.

“The ultimate aim is to make genomic testing a routine part of clinical practice – but only if patients and clinicians want it.” [Genomics England, how we work]

The infrastructure of equipment is enormous to have these sequences running 24/7 as was indicated in media TV coverage. I’m no maths whizz, but it appears to me they’re building Titantic at Genomics England and the numbers of actual people planned to take part (75K) would fit on the lifeboats. So with what, from whom, are they expecting to fill the sequencing labs after 2017?  At Genomics England events it has been stated that the infrastructure will then be embedded in the NHS. How is unclear, if commercial funding has been used to establish it. But at its most basic, there will be  no point building the infrastructure and finding no volunteers want to take part. You don’t build the ship and sail without passengers. What happens, if the English don’t volunteer in the desired numbers?

What research has been done to demonstrate the need or want for this new WGS project going forwards at scale, compared with a) present direct care or b) existing research facilities?

I cannot help but think of the line in the film, Field of Dreams. If you build it they will come. So who will come to be tested? Who will come to exploit the research uses for public good? Who will come in vast numbers in our aging population to exploit the resulting knowledge for their personal benefit vs companies who seek commercial profit? How will the commercial and charity investors, make it worth their while? Is the cost/benefit to society worth it?

All the various investors in addition to the taxpayer; Wellcome Trust, the MRC, Illumina, and others, will want to guarantee they are not left with an empty shell. There is huge existing and promised investment. Wellcome for example, has already “invested more than £1 billion in genomic research and has agreed to spend £27 million on a world class sequencing hub at its Genome Campus near Cambridge. This will house Genomics England’s operations alongside those of the internationally respected Sanger Institute.”

Whilst the commercial exploitation by third parties is explicit, there may also be another possibility to consider: would the Government want:

a) some cost participation by the participants? and

b) will want to sell the incidental findings’ results to the participants?

[ref: http://www.phgfoundation.org/file/10363 ref. #13]

“Regier et al. 345 have estimated the willingness-to-pay (WTP) for a diagnostic test to find the genetic cause of idiopathic developmental disability from families with an affected child. They used a discrete choice experiment to obtain WTP values and found that these families were willing to pay CDN$1118 (95% CI CDN$498-1788) for the expected benefit of twice as many diagnoses using aCGH and a reduction in waiting time of 1 week when compared to conventional cytogenetic analysis.”

“Moreover, it is advisable to minimise incidental findings where possible; health care professionals should not have an obligation to feedback findings that do not relate to the clinical question, except in cases where they are unavoidably discovered and have high predictive value. It follows that the NHS does not have an obligation to provide patients with their raw genome sequence data for further analysis outside of the NHS. We make no judgement here about whether the individual should be able to purchase and analyse their genome sequence independently; however, if this course of action is pursued, the NHS should provide follow-up advice and care only when additional findings are considered to be of significant clinical relevance in that individual…” [13]

How much is that cost, per person to be mapped? What is the expected return on the investment?

What are the questions which are not being asked of this huge state investment, particularly at a time when we are told he NHS is in such financial dire straits?

Are we measuring the costs and benefits?

Patient and medical staff support is fundamental to the programme, not an optional extra. It should not be forgotten that the NHS is a National Service owned by all of us. We should know how it runs. We should know what is spends. Ultimately, it is we who pay for it.

So let’s see on paper, what are the actual costs vs benefits? Where is the overall and long term cost benefit business case covering the multi-year investment, both of tangible and intangible benefits? In my personal research, I’m yet to find one. There is however, some discussion in this document:

“The problem for NGS is that very little ‘real’ information is available on the actual costs for NGS from the NHS perspective and the NHS Department of Health Reference Costs Database and PSSRU, where standard NHS costings are listed, are generally not helpful.” [13 – PHG, 2011]

Where are the questions being asked if this is really what we should be doing for the public good and for the future of the NHS?

Research under good ethics and bona fide transparent purposes is a public asset. This rollout, has potential to become a liability.

To me, yet again it seems, politics has the potential to wreck serious research aims and the public good.

Perhaps more importantly, the unrestrained media hype carries the very real risk of creating unfounded hope for an immediate diagnosis or treatment, for vulnerable individuals and families who in reality will see no personal benefit. This is not to undermine what may be possible in future. It is simply a plea to rein in hype to reality.

Politicians and civil servants in NHS England appear to use both research and the notion of the broad ‘public good’, broadly in speeches to appear to be doing ‘the right thing to do’, but without measurable substance. Without a clear cost-benefit analysis, I admit, I am skeptical. I would like to see more information in the public domain.

Has the documentation of the balance of patient/public good and  expected “major contribution to make to wealth creation and economic growth in this country” been examined?

Is society prepared for this?

I question whether the propositions of the initiative have been grasped by Parliament and society as a whole, although I understand this is not a ‘new’ subject as such. This execution however, does appear at least, massive in its practical implications, not least for GPs if it is to become so mainstream, as quickly as plans predict. It raises a huge number of ethical questions. Not least of which will be around incidental findings, as the Radio 4 interview raised.

The first I have is consideration of pre-natal testing plans:

“Aside from WGS of individuals, other applications using NGS could potentially be more successful in the DTC market. For example, the use of NGS for non-invasive prenatal testing would doubtless be very popular if it became available DTC prior to being offered by the NHS, particularly for relatively common conditions such as Down syndrome…” [

and then the whole question of consent, particularly from children:

“…it may be almost impossible to mitigate the risk that individuals may have their genome sequenced without their consent. Some genome scan companies (e.g. 23andMe) have argued that the risks of covert testing are reduced by their sample collection method, which requires 2ml of saliva; in addition, individuals are asked to sign to confirm that the sample belongs to them (or that they have gained consent from the individual to whom it belongs). However, neither of these methods will have any effect on the possibility of sequencing DNA from children, which is a particularly contentious issue within DTC genomics.” [13]

“two issues have emerged as being particularly pressing: first is the paradox that individuals cannot be asked to consent to the discovery of risks the importance of which is impossible to assess. Thus from a legal perspective, there is no ‘meeting of minds’ and contractually the contract between researcher and participant might be void. It is also unclear whether informed consent is sufficient to deal with the feedback of incidental findings which are not pertinent to the initial research or clinical question but that may have either clinical or personal significance…” [PHG page 94]

And thirdly, we should not forget the elderly. In February 2014 the Department of Health proposed that a patient’s economic value should be taken into account when deciding on healthcare. Sir Andrew Dillon, head of the National Institute for Healthcare and Excellence (NICE, who set national healthcare budgets and priorities), disagreed saying:
“What we don’t want to say is those 10 years you have between 70 and 80, although clearly you are not going to be working, are not going to be valuable to somebody.

Clearly they are. You might be doing all sorts of very useful things for your family or local society. That’s what we are worried about and that’s the problem with the Department of Health’s calculation.

There are lots of people who adopt the fair-innings approach; ‘you’ve had 70 years of life you’ve got to accept that society is going to bias its investments in younger people.”

[14 – see Channel 4] Yet our population is ageing and we need to find a balance of where roles, rules and expectations meet. And question, how do we measure human value, should we, and on what basis are we making cost-based care decisions?

The Department of Health proposed that a patient’s economic value should be taken into account when deciding on healthcare. What is their thinking on genomics for the care of the elderly?

Clinical environment changes make engagement and understanding harder to achieve

All this, is sitting on shifting, fundamental questions on how decision making and accountability will be set, in a world of ever fragmenting NHS structure:

“More problematic will be the use of specific genomic technologies such as NGS in patient pathways for inherited disorders that are delivered outside the clinical genetics services (such as services for FH, haemophilia and sickle cell disease) and NGS that is used for non-inherited disease conditions. These will be commissioned by GP consortia within established care pathways. Such commissioning of companion diagnostics would, in theory be evaluated first by NICE. However, it is not clear what capacity NICE will have across a broad range of uses. In practice it seems likely that GP consortia may make a variety of different decisions influenced by local experts and pressure, funding and different priorities. Particular questions for NGS will include: How will commissioners be provided with the necessary evidence for decision-making and can this be developed and coordinated at a national level? How will commissioners prioritise particularly when it may be necessary to invest early in order to achieve savings later? What (if any) influence may commissioners be able to exert over the configuration of test providers (for example the rationalisation of laboratories or the use of private testing companies)? [13]
Today (August 8th) the public row between Roche and the Government through NICE became apparant on cancer treatment. And again I found myself asking, what are we not funding, whilst we spend on genomics?  If you did not you hear Sir Andrew Dillon & the discussion, you can listen again on BBC Radio 2 iPlayer here. [It’s in the middle of the programme, and begins at 01:09.06.]

Questions, in search of an answer
Where has the population indicated that this is the direction of travel we wish our National Health Service to take? What preparation has been made for the significant changes in society it will bring? When was Parliament asked before this next step in policy and huge public spend were signed off and where is the periodic check against progress and public sign off, of the next step? Who is preparing the people and processes for this explosive change, announced with sparklers, at arms length and a long taper? Are the challenges being shared honestly between policy, politicians and scientists, being shared with patients and public: as discussed at the stakeholder meeting at St.Barts London, 3rd October 2013 (a key panel presentation: 45 minute video with slides)? When will that be shared with the public and NHS staff in full? Why does NHS England feel this is so fundamental to the future of the NHS? Must we abandon a scuppered and sinking NHS for personalised medicine on personal budgets and expectations of increased use of private health insurance?

Is genomics really the lifeboat to which the NHS is inextricably bound?

The Patients and Information Directorate nor wider NHS England Board does not discuss these questions in public.  At the July 3rd 2014 Board Meeting, in the discussion of the genomics programme I understood the discussion as starting to address the inevitable future loss of equity of access because of genomic stratification, dividing the population into risk pool classifications [10.42] . To my mind, that is the end of the free-to-all NHS as we know it. And IF it is so, through planned policy. More people paying for their own care under ‘personalisation;  is in line with ISCG expectations set out  earlier in 2014: “there will be increasing numbers of people funding their own care and caring for others.”

Not everyone may have understood it that way, but if not, I’d like to know what was meant.

I would like to understand what is meant when Genomics England spokespeople  say the future holds:

“Increasingly to select most appropriate treatment strategy. In the longer term, potential shift to prevention based on risk-based information.”
or
“Review the role of sequencing in antenatal and adult screening.”

I would welcome the opportunity to fully understand what was suggested at that Board meeting as a result of our shared risk pool, and readers should view it and make up their own mind. Even better, a frank public and/or press board meeting with Q&A could be rewarding.

The ethical questions that are thrown up by this seem yet to have little public media attention.

Not least, incidental findings: if by sequencing someone’s DNA, you establish there is something for their health that they ought to be doing soon, will you go to that patient and say look, you should be doing this…. these are incidental findings, and may be quite unexpected and separate from the original illness under investigation in say, a family member, and may also only suggest risk indicators, not clear facts.

If this is expected to be mainstream by 2018, what training plans are in place as indicated needed as a “requirement for professionals across the NHS to be trained in genetics and its implications”? [presentation by Mark Bale, DoH, July 2014]

When will we get answers to these questions, and more?

Because there is so much people like me don’t know, but should, if this is our future NHS under such fundamental change as is hyped.

Because even the most esteemed in our land can get things wrong. One of them at the St.Bart’s events quotes on of my favourite myths attributed wrongly to Goethe. It cannot be attributed to him, that he said, ” “Whatever you can do or dream you can, begin it. Boldness has genius, power and magic in it.” You see, we just hear something which sounds plausible, from someone who seems to know what they are talking about. It isn’t always right.

Because patients of rare disease in search of clinical care answers should be entitled to have expectations set appropriately, and participants in research know to what they, and possibly family members indirectly, are committed.

Because if the NHS belongs to all of us, we should be able to ask questions and expect answers about its planning,  how we choose to spend its budget and how it will look in future.

These are all questions we should be asking as society

Fundamentally, in what kind of society will my children grow up?

With the questions of pre-natal intervention, how will we shape our attitudes towards our disabled and those who are sick, or vulnerable or elderly? Are we moving towards the research vision Mr.Hunt, Cameron and Freeman appear to share, only for good, or are we indeed to look further head to a Gattacan vision of perfection?

As we become the first country in the world to permit so called ‘three parent children’ how far will we go down the path of ‘fixing’ pre-natal genetic changes, here or in PGD?

How may this look in a society where ‘some cornflakes get to the top‘ and genetic advantage seen as a natural right over those without that ability? In a state where genetics could be considered as part of education planning? [16]

For those with lifelong conditions, how may genetic screening affect their life insurance when the Moratorium expires*  in 2017 (*any shift in date TBC pending discussion) ? How will it affect their health care, if the NHS England Board sees a potential effect on equity of access? How will it affect those of us who choose not to have screening – will we be penalised for that?

And whilst risk factors may include genomic factors, lifestyle factors some argue are even more important, but these change over time. How would those, who may have had past genetic screening be affected in future requirements?

After the August 1st announcement, [11] The Wellcome Trust‘s reporting was much more balanced and sensible than the political championing had been. It grasps the challenges ahead:

“Genomics England has ambitious plans to sequence 100,000 genomes from 75,000 people, some of whom will also have cancer cells sequenced. The sheer scale of the plans is pretty daunting. The genetic information arising from this project will be immense and a huge challenge for computational analysis as well as clinical interpretation. It will also raise a number of issues regarding privacy of patient data. Ensuring that these genetic data can be used maximally for patient benefit whilst protecting the rights of the individual participant must be at the heart of this project.

At the beginning of the Human Genome Project, scientists and funders like the Wellcome Trust knew they were on a journey that would be fraught with difficulties and challenges, but the long-term vision was clear. And so it is with the plans for Genomics England, it will most certainly not be easy…”

Managing change

Reality is that yet again, Change Management and Communications have been relegated to the bottom of the boarding priorities list.

This is not only a research technology or health programme. Bigger than all of that is the change it may bring. Not only in NHS practice, should the everyday vision of black boxes in GP surgeries become reality, but for the whole of society. For the shape of society, in age and diversity. Indeed if we are to be world leaders, we have potential to start to sling the world on a dangerous orbit if the edges of scope are ill defined. Discussing only with interested parties, those who have specific personal or business interests in genomic research and data sharing, whilst at Board meetings not clearly discussing the potential effects of risk stratification and personalisation on a free at the point of delivery health service is in my opinion, not transparent, and requires more public discussion.

After all, there are patients who are desperate for answers, who are part of the NHS and need our fair treatment and equity of access for rare disease. There is the majority who may not have those needs but knows someone who does. And we all fund and support the structure and staff in our world class service, we know and love. We want this to work well.

Future research participation depends on current experience and expectations. It is the latter I fear are being currently mishandled in public and the media.

Less than a month ago, at the NHS England Board Meeting on July 3rd,  Lord Adebowale very sensibly asked, “how do we lead people from where we are, and how we take the public with us? We need to be a world leader in engaging all the public”

Engagement is not rocket science. But don’t forget the ethics.

If this project is meant to be, according to MP George Freeman [George 2], akin to Kennedy launching the Space Race, then, by Fenyman [12], why can they not get their public involvement at big launches sorted out?

Is it because there are such large gaps and unknowns that questioning will not stand up to scrutiny? Is it because suggesting a programme will end the NHS as we know it, would be fatal for any politician or party who supports that programme in the coming year? Or do the leading organisations possibly paternalistically believe the public is too dim or uninterested or simply working to make ends meet to care [perhaps part of the 42% of the population who expected to struggle as a result of universal welfare changes,  one in three main claimants (34 per cent) said in 2012 they ‘run out of money before the end of the week/month always or most of the time’] ? But why bother will the big press splash, if it should not make waves?

In the words of Richard Feynman after the Challenger launch disaster in 1986:

“Let us make recommendations to ensure that NASA officials deal in a world of reality in understanding technological weaknesses and imperfections well enough to be actively trying to eliminate them. They must live in reality in comparing the costs and utility of the Shuttle to other methods of entering space. And they must be realistic in making contracts, in estimating costs, and the difficulty of the projects.

Only realistic flight schedules should be proposed, schedules that have a reasonable chance of being met.

If in this way the government would not support them, then so be it. NASA owes it to the citizens from whom it asks support to be frank, honest, and informative, so that these citizens can make the wisest decisions for the use of their limited resources. For a successful technology, reality must take precedence over public relations… [June 6th 1986. Six months after the disaster, the Report to the Presidential Commission (Appendix F)]

Just like the Rosetta spacecraft is getting ever closer to actually landing on the comet, its goal, [15 – BBC Newsround has an excellent little summary] after over ten years, so too is genomics close to the goal of many. It is within grasp that the long-planned mainstreaming of genomic intervention, will touch down in the NHS. My hope is that in its ever closer passes, we get hard factual evidence and understand exactly where we have come from, and where we intend going. What will who do with the information once collected?

The key is not the landing, it’s understanding why we launched in the first place.

Space may not be the most significant final frontier out there in the coming months that we should be looking at up close. Both in health and science.  Our focus in England must surely be to examine these plans with a microscope, and ask what frontiers have we reached in genomics, health data sharing and ethics in the NHS?

******  image source: ESA via Nature

[1] “It’s a hugely ambitious project, it’s on a par with the space race how Kennedy launched 40 years ago.” [from 2:46.30 BBC Radio 4 Int. Sarah Montague w/ George Freeman]

[2] Downing Street Press Release 1st August – genomics https://www.gov.uk/government/news/human-genome-uk-to-become-world-numb

[3] 6th December “Transcript of a speech given by Prime Minister at the FT Global Pharmaceutical and Biotechnology Conference” [https://www.gov.uk/government/speeches/pm-speech-on-life-sciences-and-opening-up-the-nhs]

[4] 10th December 2012 DNA Database concerns Channel 4 http://www.channel4.com/news/dna-cancer-database-plan-prompts-major-concerns

[5] Wellcome Trust- comment by Jeremy Farrar http://news.sky.com/story/1311189/pm-hails-300m-project-to-unlock-power-of-dna

[6] Strategic Priorities in Rare Diseases June 2013 http://www.genomicsengland.co.uk/wp-content/uploads/2013/06/GenomicsEngland_ScienceWorkingGroup_App2rarediseases.pdf

[7] NHS England Board paper presentation July 2013 http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item16.pdf

[8] ICO and HSCIC on anonymous and pseudonymous data in Computing Magazine http://www.computing.co.uk/ctg/news/2337679/ico-says-anonymous-data-not-covered-by-data-protection-act-until-its-de-anonymised

[9] HSCIC Pseudonymisation Review August 2014 http://www.hscic.gov.uk/article/4896/Data-pseudonymisation-review

[10] November 2013 ISCG – political pressure on genomics schedule http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-001-ISCG-Meeting-Minutes-and-Actions-26-November-2013-v1.1.pdf

[11] Wellcome Trust August 1st 2014 The Genetic Building Blocks of Future Healthcare

[12] Fenyan – For successful technology reality must take precedence over PR https://jenpersson.com/successful-technology-reality-precedence-public-relations/

[13] Next Steps in the Sequence – the implications for whole genome sequencing in the UK – PHG Foundation, funded by the PHG Foundation, with additional financial support from Illumina. The second expert workshop for the project was supported by the University of Cambridge Centre for Science and Policy (CSaP) and the Wellcome Trust http://www.phgfoundation.org/file/10363

[14] Anti-elderly drugs proposals rejected by NICE: Channel 4 http://www.channel4.com/news/nice-assessment-elderly-health-drugs-rejected-contribution

[15] BBC Newsround: Rosetta spacecraft and the comet chasing

[16] Education committee, December 4th 2013 including Prof. Plomin From 11.09:30 education and social planning  http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14379

*****

For avoidance of confusion [especially for foreign readership and considering one position is so new], there are two different Ministers mentioned here, both called George:

One. George Osborne [George 1] MP for Tatton, Cheshire and the Chancellor

Two. George Freeman [George 2] MP – The UK’s first-ever Minister for Life Sciences, appointed to this role July 15th 2014 [https://www.gov.uk/government/ministers/parliamentary-under-secretary-of-state–42]

 

*****

#caredata, care.data, communications, engagement, genomics, leadership, NHS, NHSEngland, politics, trust

Launching genomics, lifeboats, & care.data

On Friday 1st August the media reported the next giant leap in the genomics programme in England, suggesting the 100K Genomics Project news was akin to Kennedy launching the Space Race. [1] [from 2:46.30].

“The UK is set to become the world leader in ground-breaking genetic research into cancer and rare diseases, which will transform how diseases are diagnosed and treated, thanks to a package of investment worth more than £300 million.” [DH press release, August 1 2014. [2] ]

Whilst Mr. Cameron & George Osborne visited the arson-damaged Eastbourne Pier, the lifeboat staff and firemen who attended, back in Downing Street, representatives led by George Freeman MP signed the £300M investment package, the next step in the genomic investment plan, with American Jay Flatley, CEO of Illumina.

Mr. Cameron first announced this research drive shared with commercial pharmaceutical companies on 6th December 2011 and famously said ‘every willing patient should be a research patient'[3] (video) and they would consult to change the NHS Constitution to enable it:

“…with their medical details “opened up” to private healthcare firms, says David Cameron.”

George Freeman_ 100K

This was the next step in the programme, hailed as an historic moment, a giant leap forward for genomics.

The photo call for the symbolic signing included Jay Flatley President, Chief Executive Officer and a member of the Board of Directors of Illumina, Inc, Sir John Chisholm Executive Chair of Genomics England & Chair of Nesta, together with Dame Sally Davies Chief Medical Officer and Mr. George Freeman [George 2] MP for mid-Norfolk, and the newly appointed Life Sciences Minister.

Fewer than twelve months before an election the Government has decided to commit commercially to a US based company, in a programme which Mr.Cameron himself said,  has had controversy. That c-word is one the Conservatives will want to avoid in the coming election campaign.

This Channel 4 [4] film from almost 2 years ago, (December 2012) raises many questions as valid today as then. At that time, in contrast with today’s approach, the programme suggests that consent for research and data use would be assumed for all.

The inestimable Jon Snow asked then, why is the Business Department announcing this [the launch of the pilot programme, when focused then first in rare cancers]? The public may understand that commercial pharma, charities and the State work hand-in-glove (as Mr.Cameron’s 2011 vision stated), but as Jon Snow asks, not yet understand how this commercial venture will benefit the NHS long term as well as individual patients and the public as a whole? Is it concrete on benefits to patients vs benefits to UK plc?

So what was the key press message which came over?

The coverage of the week since August 1st, expounded the belief that through Genomics England Ltd we will do away with  chemotherapy in the future. I believe this should be the source of a raging debate, but it passed by with little more than a few waves.

“We will look back in 20 years’ time and the blockbuster chemotherapy drugs that gave you all those nasty side effects will be a thing of the past,”said Jeremy Farrar Director of the Wellcome Trust, reported Sky. [5]

The original review given last summer to Genomics England including listing the rare diseases which may affect the 6% of the population, suggests one consideration, targeting those with very high likelihood of familial links and therefore success.[6] or Patients selected with a high probability of a single gene disorder. There are obviously great challenges in turnaround time for the genetic processing to be useful in clinical decision making. Considering whether or not it is timely or accurate enough to be of clinical benefit in acute cancer care clinical decision making will be vital. It is also what is being promised to patients who sign up, a faster, more efficient, improved offering on what is available already in the NHS genetic services today.

The interested population and profession would do well to get an independent medical update on the status of this, to understand it better if this is now established and its reliability, so what participants sign up for, is what they get on the tin:

“Results are provided for patients in a timely fashion (e.g. within 8 weeks) and with sufficient clinical accuracy (not yet established for WGS) [whole genome sequencing].” [page 3 of 8]

And what was the press result and public reaction to the news?

As one example, look at lunchtime on Friday August 1st, Radio 2 callers to the Jeremy Vine show. They included two undergoing chemo who felt they had to call  in, to tell others, chemo is not always as bad as it sounds and make sure you don’t give up on it, refuse treatment or wait for this new genetic solution.

The impression was given, there is a new wonder solution within grasp on the horizon. This seemed to me rather reckless and unfairly manipulative on the ill and vulnerable to give them a blanket hope, that their cancer treatment may become so much better, soon. These are real people’s lives, not guinea pigs with which one can feel free to trial hypothesis and hype. If anyone now refuses chemo as a result of the Friday fantasy projections, their health may have been directly impacted. I would like to have heard a DH or Genomics England press manager speaking, not allowing such public free rein, to ensure it was factually accurate. But I’m guessing that Genomics England as an ALB is not really ready for press yet [their public engagement and education programme isn’t ready yet they confirmed when asked in July in an FOI],  and the DH perhaps at arms length, thinks, it’s not their responsibility and outside their remit. Stuck in the middle, we have the commissioning body, NHS England.

How might this involve all of us, our NHS and cross into care.data?

In most recent memory, NHS England tried and so far failed in February 2014, to engage the public and clinicians in the extraction of our GP stored health records, in the care.data initiative. Care.data languishes in some sort of unknown black hole at the moment, with little public engagement and pilots promised ‘for autumn’. Both programmes are run under the auspices of Mr. Kelsey at NHS England Patients and Information Department, and arms length from the Department of Health. Last summer, Tim Kelsey and Sir Bruce Keogh presented a paper to the Board on Genomics and its interaction with NHS patient records. [7]

Given that the Genomics paper indicated that care.data and NHS held patient records were of paramount importance to NHS England I would like to have seen more transparency over this, including informed public and parliamentary debate:

“Issues of data ownership and transparency are of paramount importance to NHS England as set out in the Mandate and given the hugely positive developments in Care.Data. Geraint  Lewis is leading this work, and has begun work to consider how the sequencing data might be held, connected to patient records and subsequently be exploited. It will also look at the connections between this work and the establishment of care data in the NHS. The NHS England data and informatics team will retain oversight of the informatics and data work and discussions continue on how it can best inform and support the implementation of business plan of Genomics England Limited.”

NHS England Board paper, July 2013 [7]

There has been almost no public statement from NHS England on genomics and our data management in the same discussion, until now. George Freeman MP [2] said on BBC Radio 4 (Starting from 2:46.30 in interview with Sarah Montague:

“It’s absolutely not the care.data initiative discussed earlier in the year. This is 100K patients, all volunteering and all providing their consent. It’s completely anonymised data in the data set, the only person who would be able to come back to the patient and make a link with the genomics and the diagnosis, is their doctor. We’re creating a database so that NHS researchers and industry researchers, can look at the broad patterns. 90% of patients with that variation, get that disease, this drug works in 50% of patients…It’s completely anonymised, there is no basis on which you could make the link. The only person who can make the link is the NHS clinician.”

Whilst this is NOT the same initiative, it intends to use some of the same data for those people who actively consent to participate in the 100K Genome Project.

The data will be extracted from care.data [which ‘assumes consent’ or requires active opt OUT, depending how you view it] to include longitudinal, phenotype data across a person’s lifetime. I spoke to the Genomics England media team last autumn, 2013, which confirmed this intent at that time.

The trouble is for Mr. Freeman [2] and these statements, that the public knows ‘anonymous’ in care.data turned out to not be anonymous at all.  ICO and HSCIC [8] are still working this out. [HSCIC has just published its first review of pseudonymisation review 9] It was discovered that far from being released only to clinicians and researchers, our hospital data has been shared with all sort of unexpected third parties, without consent. [see the Partridge Review]. This surprised and shocked many, to public outcry and the resultant loss of trust [15] in the programme has yet to be rebuilt. So some listeners may well and understandably have had concerns that their data may be used for purposes to which they have not agreed.

Some say that genetic data by its very nature, despite stripping data identifiers, cannot be non-identifying, or stay that way:[16]

“It only takes one male,” said Yaniv Erlich, a Whitehead fellow, who led the research team. “With one male, we can find even distant relatives.” [Jan 2013]

“If they choose to share that’s a very admirable thing because by sharing freely, progress for everyone is accelerated, and if someone is not comfortable we should respect that too and find ways for them to still participate in research,” he said.

What are the next steps – or should we expect, one giant leap?

As regards care.data from all,  it is I believe reasonable,  that we should we ask: how we should expect our care.data to be used, and trust for what restricted purposes it will be extracted and stored for the future?  What mechanisms will separate consent for care.data commissioning from this kind of research? How will citizens trust this data sharing now as the Department for Patients and transformation care.data proposals seem still open ended in scope in particular for social care [17], and alongside other ever widening government data sharing? [18] How will the public know where the future boundaries of care.data scope creep lie?

If anything has been learned from care.data to date it must be this: We should  continue to ask for more public involvement in policy and planning,  not just the post-event PR if the state wishes to ensure success and prevent surprises. What happens next for this data programme, and for our national programme of genomics, 100K?

{Part two continues here}

******

[1] “It’s a hugely ambitious project, it’s on a par with the space race how Kennedy launched 40 years ago.” [from 2:46.30 BBC Radio 4 Int. Sarah Montague w/ George Freeman]

[2] Downing Street Press Release 1st August – genomics https://www.gov.uk/government/news/human-genome-uk-to-become-world-numb

[3] 6th December “Transcript of a speech given by Prime Minister at the FT Global Pharmaceutical and Biotechnology Conference” [https://www.gov.uk/government/speeches/pm-speech-on-life-sciences-and-opening-up-the-nhs]

[4] 10th December 2012 DNA Database concerns Channel 4 http://www.channel4.com/news/dna-cancer-database-plan-prompts-major-concerns

[5] Wellcome Trust- comment by Jeremy Farrar http://news.sky.com/story/1311189/pm-hails-300m-project-to-unlock-power-of-dna

[6] Strategic Priorities in Rare Diseases June 2013 http://www.genomicsengland.co.uk/wp-content/uploads/2013/06/GenomicsEngland_ScienceWorkingGroup_App2rarediseases.pdf

[7] NHS England Board paper presentation July 2013 http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item16.pdf

[8] ICO and HSCIC on anonymous and pseudonymous data in Computing Magazine http://www.computing.co.uk/ctg/news/2337679/ico-says-anonymous-data-not-covered-by-data-protection-act-until-its-de-anonymised

[9] HSCIC Pseudonymisation Review August 2014 http://www.hscic.gov.uk/article/4896/Data-pseudonymisation-review

[10] November 2013 ISCG – political pressure on genomics schedule http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-001-ISCG-Meeting-Minutes-and-Actions-26-November-2013-v1.1.pdf

[11] Wellcome Trust August 1st 2014 The Genetic Building Blocks of Future Healthcare

[12] Fenyan – For successful technology reality must take precedence over PR https://jenpersson.com/successful-technology-reality-precedence-public-relations/

[13] Next Steps in the Sequence – the implications for whole genome sequencing in the UK – PHG Foundation, funded by the PHG Foundation, with additional financial support from Illumina. The second expert workshop for the project was supported by the University of Cambridge Centre for Science and Policy (CSaP) and the Wellcome Trust http://www.phgfoundation.org/file/10363

[14] Anti-elderly drugs proposals rejected by NICE: Channel 4 http://www.channel4.com/news/nice-assessment-elderly-health-drugs-rejected-contribution

[15] The Royal Statistical Society identifies a Trust Deficit

 [16] The Whitehead Institute for Biomedical Research in Cambridge, Mass in the WSJ, Jan 2013: “”It only takes one male,” said Yaniv Erlich, a Whitehead fellow, who led the research team. “With one male, we can find even distant relatives.”
[17] Adult Social care ISCG,  2014 http://www.england.nhs.uk/iscg/wp-content/uploads/sites/4/2014/01/ISCG-Paper-Ref-ISCG-009-002-Adult-Social-Care-Informatics.pdf  “Personalisation – citizens should increasingly be empowered to have choice and control over their care; and there will be increasing numbers of people funding their own care and caring for others”

*****

For avoidance of confusion [especially for foreign readership and considering one position is so new], there are two different Ministers mentioned here, both called George:

One. George Osborne [George 1] MP for Tatton, Cheshire and the Chancellor

Two. George Freeman [George 2] MP – The UK’s first-ever Minister for Life Sciences, appointed to this role July 15th 2014 [https://www.gov.uk/government/ministers/parliamentary-under-secretary-of-state–42]

*****

activism, empowerment, engagement, politics, women

Deeds not Words – Women’s Political and Electoral Engagement

Suffragette
ca 1920 first US election to offer women the right to vote

“A hundred years on, would those suffragist women feel it was worth their collective effort and what it cost them as individuals?”

One hundred years ago today, protestors gathered outside Buckingham Palace under the banner of ‘Votes for Women‘. It was barely a year since the death of Emily Wilding-Davison at the Derby in June, 1913. Possibly the best known of the women who had campaigned in the suffragist movement (1), made famous after she died from her injuries after being trampled by the King’s horse Anmer at Tattenham Corner (2). There is still debate whether it was suicide or accidental.

The National Union of Women’s Suffrage (the NUWSS) had failed through peaceful means to reach their goal despite having the support of men and members’ bills in Parliament. The Sufragette group, the WSPU, were less patient.

Under the slogan ‘Deeds not Words’, the anniversary of Emily Wilding Davison’s death last summer triggered a spate of features. There was an excellent historical account delivered in Parliament, by Dr. Mari Takayanagi (4), which includes how the movement and ‘votes for women’ and first female MPs appeared to have made a difference in Parliament.

“There was a raft of legislation passed throughout the 1920s on issues that affected women’s lives and gender equality – including things like the Sex Disqualification Removal Act which allowed women to practice as lawyers, to enter professions like accountancy and become vets and so on for the first time. There were acts about things like pensions; there were acts allowing women to inherit property; there were acts about things like the age of consent and the sale of alcohol to young people. The list goes on and on.

And none of this kind of thing was passed before the First World War and you’ve got to think it’s because women are part of the electorate now and the male MPs had to sit up and take notice of their views as they hadn’t before.”

However, what has been done since the anniversary to address the importance and relevance of women’s votes today and to encourage electoral engagement before these European and local elections on May 22nd 2014?

A hundred years on, would those suffragist women feel it was worth their collective effort (3) and what it cost them as individuals?

In 2013 my local election saw the Conservative candidate win only 231 votes ahead of UKIP – both candidates attaining over 1000 votes, in a turnout of barely 32%. I spoke to her and others, after that vote, on the subjects of women in politics and the continued importance of women’s rights and activism.

Pat Arculus, is our Conservative County Councillor and an Adult Safeguarding Champion. She said,

“It’s a funny game politics, how can we change it? I’ve just been watching Question Time. They’re arguing about the Health Service. You watch it and think, how is this relevant? Why don’t they just get together and sort it out? I think that may be it, women just want to get things done. You run a family, you have a problem, you sort it out and get on. You don’t spend hours arguing about it. Perhaps that’s what puts women off politics.”

Women today in the UK get to participate in the democratic process thanks at least in part, to the efforts and commitment of those women, not so many generations ago  But do women today see the need for their active participation? According to Mrs. Arculus, her recent experience of electoral engagement is poor.

“There is a complete disaffection. It’s not even apathy. It’s “we don’t like politics”, “it doesn’t make any difference,” and “it doesn’t matter who we vote for.” If our young people hear that, then it’s a self-fulfilling prophecy.

“I was delivering leaflets and teenagers in the garden, I don’t know if they were of voting age, said, “no no take it back, we don’t vote for them.” I was shocked. As a mother it’s not my place to tell them who to vote for. I’d say to young people, read everything, read them all and make your own mind up. If you go into schools and they run mock elections, they are more active than we give them credit for. They seem to lose it, when they get older and don’t see any point.”

But this comment from a year ago, is what we must encourage the major parties pay attention to now, for the 2015 General election:

“In the last election, my majority fell from 2,800 to 220 and that all went to UKIP. So the public are feeling angry, about something.”

Emily Davison, with a first class degree in English as a man, could have walked into many jobs. In her time, with the equivalent as a woman, she was unable to participate in various circles, and found work as a governess and then, as a result of her activism, was sacked.

The issues of equal employment rights, pay and the role of women in childcare and the home are as current today as they were then. We should not take women’s rights to vote here, or in non-UK locations for granted even in countries we may not expect it. Switzerland granted women the vote only in 1971, and it wasn’t until the 90s in some municipalities. And it is easy to forget that full Parliamentary equality in the UK was not achieved until the Peerages Act of 1963.

Women as MPs, mothers, as managers, all as ordinary citizens need to stay as alert as ever to the equality of rights we have come to expect as the norm, to preserve them and to pass on their worth and relevance to our children. Men need to as well, just as importantly.

Rosamund McNeil, Head of Education and Equality at the NUT told me,

“Sometimes it is taken for granted that women today can have public roles, a life outside the home and can speak for themselves. The suffragettes must be celebrated because it reminds us that change and progress is hard won, and that gains for women must be guarded and not reversed. By looking back, it can generate creativity about how to take forward the debate on women’s inequality. I think their stories can inspire young women today to take control of their lives, to make their voices heard and to defy the stereotypes that remain about what women should say, think and do.”

So are the voices of our young women being included and heard in the current election? The suffragist women campaigned with passion for enfranchisement, for the right to vote and to have woman’s voices heard. One may say today,  to become empowered.

There is a feeling about voting today, that it has lost its power.  Not just for women. As exemplified in Pat Arculus’s story, the feeling that whoever we vote for makes no difference, it’s all the same anyway. Talking to people on the street this week about the European Election on May 22nd, I heard the same things.

Worryingly for me, I’ve found there is an undercurrent of nervous excitement when someone mentions UKIP. In our exchanges in the street, whilst out campaigning to encourage voting participation (of any party) on the European Election, there was a spark in the conversation. People talk openly between each other, of a shake up, of change. Men I spoke with seem quite unconcerned with racism or policy, almost as if acknowledging that there’s a touch of racism and misogyny in all of us, just the ‘real politicians’ are too plastic to let it show. A few men brushed aside hard questions, with a hand flutter of bravado. You get the feeling, there’s almost a hint of ‘at least he’s himself, flaws and all.’

Our respected elder statesmen, have for the most part, left the House of Commons.  We hear staged soundbites and laugh at PR gaffes. But is this to the detriment of politics seeming real? Has spin created an image of politics so worried about what it looks like in the press (5), that to the people it looks like nothing we can connect with or trust? So afraid of making a mistake, that can be exploited by the other side, that the leaders have forgotton who they really are at heart and why we should trust in them?

I feel it is this, which women in England feel disaffected by, why politics seems like a man’s game. But both men and women appear to feel disenfranchised, that mainstream parties are too similar, and anyway, ‘they’re all politicians’. 72% of adults surveyed by Ipsos Mori last June felt in general MPs could not be trusted to tell the truth (10). We don’t trust most politicians, we can’t be bothered with all the game playing and word play behind ceremony and late night debates with party political point scoring. We’ve too much else to do with family, work, volunteering and caring, and everything else women take on and juggle. That’s the impression and sentiments I have been given listening on the street to the middle aged and younger voters.

The risk is, through lack of political involvement we disempower our voice. It is even harder to influence politics from outside. The broader risk is, we also see women falling away from the polling booths as was reflected in some of the women I spoke to this week, who either weren’t aware of the election or did not plan to vote on May 22nd. Political apathy leads to electoral apathy as well.

We also risk passing on that disinterest and lack of knowledge to our children.  As one 17 year old girl told me when I asked how they would feel about voting in the next General Election,

“I don’t know anything about it. I don’t think it matters what you vote for, so I don’t think I would. I thought Tony Blair was Prime Minister till someone told me last week he’d changed.”

Her friend added,

“It’s quite exciting though. Seeing as we would be allowed to (vote) for the first time.”

I’d like to think that spark of excitement, could be spread, and underpinned by some conscious thought, to make a difference in the future. But surrounded by friends or family who are apathetic, without encouragement, it is likely to be put out.

Women who choose not to vote run the risk that we will enable men with the hints of the Farage to become empowered through our inaction.  I’m not saying all men, and all women, revealed this split in  tendencies by any means. Or that support of any party is gender based. But it was a noticeable enough trend in a spread of white, middle class Sussex adults whom I spoke with this week.

As it appears manstream parties which have become ever closer together are not representing the views of many people and are not to be trusted, people are looking at the outer wings of the political spectrum, and looking to people who may be imperfect, but look and sound real.

Overall, people just want a decent life in which people get on, are safe, thrive and look out for one another. Most people, like society to be inclusive. That’s what I picked up in a the majority of opinions. But they don’t appear to believe that common sensed approach is well enough represented in politics. Because party politics skews it.

Just talking to people, it appears a common thread that when it feels that manifestos are meaningless especially in coalition (6), people fail to trust them and the parties who propose them. Unable to be convinced by policies, they are instead attracted to people they believe in. We need people with whom the disenchanted can connect in a sensible way without having to reach out to the extreme margins of politics. We need policies and politicians we can trust. We need genuine, passionate people we can believe in.

We need to see that there is value in our vote and see a need to use it wisely.

As the Rt Hon the Baroness D’Souza reiterated in a presentation (7) last autumn,

“political engagement is not a luxury which can be tacked on to society, once it is sufficiently developed. It is a basic human right which affects our lives and livelihoods.”

You could argue that where people’s priorities are simply subsistence and survival, political empowerment is low on their agenda. Standing up for political and electoral involvement should not be a luxury in the UK, where we might believe developmental barriers do not stand in our way to political engagement. But there are many families and individuals in this country for whom economic security or access to further education are not a given.  Government policies which undermine  either for any parts of society, risk not only harming parity of esteem, but risk undermining the opportunities for full & equal access to involvement in political engagement,  which undermines basic democracy.

The electoral commission, identified (8) that those suffering from social deprivation tend to also be the most politically excluded in society and political disengagement can itself be a form of social exclusion.

A basic lack of trust in our elected representatives, is a sad state of affairs. Combined with a lack of knowledge,  a cynicism about politics is shaping politics in ways which mainstream parties should be taking seriously and acting upon.

According to an Ipsos MORI poll in December 2013, 77% of adults asked agree that they know less about the issues in a European Parliamentary Election than at a General Election. (9)

“Public cynicism with politics is nothing new, but it looks like it has become entrenched.  Disenchantment with politicians is shared across supporters of all parties – but is noticeably higher among UKIP voters, who seem most unhappy with the current political scene.” (Ipsos MORI 10)

It might not be sweet in reality to become actively, politically  involved, like Disney’s Mrs. Banks would have us believe of the suffragettes, but we need to remember their ‘Deeds not Words’ of the past. We need to remember why it is still necessary today. And we need to encourage our friends, family and daughters to remember Emily and all the ordinary women who made a difference, so that we may have the choice to vote as a right, one which they had to fight for.

No matter how disenchanted we feel, we are no longer  disenfranchised unless by choice. Women, get out and vote.  Get electorally involved at least. Remember what others sacrificed for us to be able to do so. Well done  sister suffragette!

If the majority of the population don’t vote, we shouldn’t be surprised if the collective majority opinion, is less represented than it should be. That allows the extreme views, over representation.

We need our collective engagement just as much today, as a hundred years ago.

____

Refs:

1. Votes for Women Open lecture slides by Dr. Mari Takayanagi

2. British Pathe – Emily Davison and the Derby

3. BBC bitesize history of the Suffrage movement

4. Dr. Mari Takayanagi full lecture notes

5. Rebranding ed Miliband – The Guardian April 2nd 2014,  Krishnan Guru-Murthy, Michael White, Lauren Cochrane, Lance Price and David Schneider

6. Defending the Coalition will cost the Lib Dems letter from Social Liberal Forum, August 2013

7. Towards Political engagement for women Rt Hon the Baroness D’Souza presentation Nov 2013, Parliament Week 2013

8. Social exclusion and political engagement Research report by the Electoral Commission – Nov 2005

9. Ipsos MORI December 2013 poll. Ipsos MORI interviewed a representative sample of 1,286 adults aged 18+ across Great Britain.

10. Ipsos MORI 2013 Trust in MPs poll, Ipsos MORI interviewed a representative sample of 1,023 adults aged 18+ across Great Britain. Data are weighted to match the profile of the population.