Literary representations of maternity

Narrative obstetrics: on literary representations of maternity

by Helen Charman, PhD Candidate at Trinity Hall and the Faculty of English, University of Cambridge.

In February— in case you needed reminding— Beyoncé announced that she was pregnant with twins via a heavily symbolic photoshoot that drew on everything from 15th century Flemish portraiture to Botticelli’s Birth of Venus to Queen Nefertiti. Announced on the first day of Black History Month in America, the pictures figure as a twofold celebration of historically marginalised and objectified physicalities. Amongst the inevitable media furore, the celebrations were countered by predictable complaints from the entire political spectrum of the media, backed up by censorious comments from members of the public. Readers all over the U.K. felt compelled to share that they ‘couldn’t care less’ about the announcement, urging the papers to ‘write about real news’ instead. In fact, many commenters professed to care so little about Beyoncé and her belly that they composed quite lengthy rants about it. Perhaps, as seems to have been the case for one visitor to The Sun online, the photographs were the final straw: ‘Yet another preggie publicly flaunting that ugly bump. Why cant these people wear sensible clothes and cover up, keep the naked pics for their own eyes.’

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A photo from Beyoncé’s photoshoot

The desire to censor the pregnant female body is nothing new, and it goes hand in hand with our inability to discuss things like the menstrual cycle without deferring to the delicate sensibilities of actual or imagined listeners, particularly male ones. Beyoncé’s photographs were accompanied by a poem by Warsan Shire, making the link to Venus— goddess of love— explicit, and reinforcing the sexual aspect of the images: ‘in the dream I am crowning / osun, / Nerfetiti, / and yemoja / pray around my bed’. The photograph that seemed to incense people the most was the one posed sitting on the roof of a car: a hyper-sexualised pose familiar to many from calendars and glamour magazines. Critics were also vocal about the ‘exploitative’ nature of the photographs, suggesting that there was something unseemly about Beyoncé— who, as of March 2017, has a net worth estimated by Forbes to be over $290 million — ‘using’ her pregnancy to contribute to her lucrative personal brand. The announcement illustrated a familiar truth: the intersection of female sexuality and economic power— and its mirror image, commodification— touches on deep-seated societal fears. Although the smattering of tight-lipped comment pieces framing their disapproval of the photograph’s lavish celebration of the pregnant body as concern for childless women were mostly disingenuous— this concern doesn’t usually seem to bother tabloid newspapers who mine ‘fertility’ dramas for exposure— they served to illuminate the paradox of maternity: censorship goes hand in hand with idealisation. Some of the positive responses to the announcement were deceptively conservative in their valourisation of motherhood as a woman’s ‘true’ purpose, something all too easily appropriated by exclusionary and harmful discussions about what ‘real’ womanhood is or should be.

My doctoral research evidences that these conflicting attitudes to motherhood are far from a new phenomenon. I am a PhD student in the Faculty of English at the University of Cambridge, and my doctoral research uses the novels of the prolific Victorian author, translator and essayist George Eliot as a focus through which to explore the changing attitude towards maternity in the nineteenth century. In her seminal study of ‘motherhood as experience and institution’, Of Woman Born, Adrienne Rich asks how have women given birth, who has helped them, and how, and why? These are not simply questions of the history of midwifery and obstetrics: they are political questions.’[1] My project contends that by the time Eliot published her last novel, Daniel Deronda, in 1876 the political aspects of these questions had become issues of economic and literary production, too: like the furore around Beyoncé’s baby bump, the response to pregnant bodies in the nineteenth century demonstrated subversive power they held over every aspect of society.

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George Eliot

In the Victorian period the mother was idealised as, in Coventry Patmore’s phrase, ‘the angel in the house’: the pressures of the new industrial age created a divide between the public, masculine workplace and the feminine, domestic domain of the home, which was seen as place of moral stability in a changing world. Yet the domestic idolisation of the mother was closely linked to the rapid economic and political advancements occurring in ‘masculine’ society. From the eighteenth century onwards, childbirth itself had become radically medicalized: rather than midwives attending to expectant mothers in their homes— in exclusively female spaces— lying-in hospitals, male obstetricians and the use of forceps became the norm. Wet-nursing turned mother’s milk— and the lactating breast— into a commodity. Throughout the nineteenth century, the effectiveness of these medical advancements was fiercely debated in publications like the British Medical Journal and The Lancet: these discussions were overwhelmingly dominated by men who linked the debates around childbirth to broader political and moral debates of the time. Ruth Perry, Valerie Fildes and other historians of motherhood have made a persuasive argument that this medicalization, alongside the charitable drives to save infant lives in the eighteenth and nineteenth centuries such as the establishment of the London Foundling Hospital, links the construction and valourisation of bourgeois motherhood to the Victorian concern with Empire. As Perry puts it,

… motherhood was a colonial form—the domestic, familial counterpart to land enclosure at home and imperialism abroad. Motherhood as it was constructed in the early modern period is a production-geared phenomenon analogous to the capitalizing of agriculture, the industrializing of manufacture, and the institutionalizing of the nation state.[2]

In the nineteenth century, the emergence of the maternal ideal was, rather than a positive or empowering development for women, a means of co-opting the female reproductive body into the service of a patriarchal societal and economic system.

So how does this link to the literature? By the end of the nineteenth century, the novel had become the most prominent literary form in Britain. The revival of serialisation increased accessibility and, combined with the dominance of social realism, meant prose fiction was a highly relevant and reactive art form. In the first half of the century, economists had reformulated traditional concepts of value according to the ability to generate financial returns. As the novel became increasingly concerned with an explicitly capitalist system of value, the figure of the mother became symbolic of these ongoing debates about worth: the commodification of care. The reproductive bodies of the female protagonists in George Eliot’s novels, as well as in the work of her contemporaries like Charles Dickens, are embedded in a complex value system in which their idealized virtue is directly related to their economic function as producers.

Maternal virtue, however, was inconveniently linked to sexuality. The female body was most acceptable when it could be rationalised as fulfilling the function of maternity, but the physical reality of pregnancy was a threat to repressive norms that governed Victorian society. As Carolyn Dever notes, novels of this period were struggling of an impossible reconciliation of ‘a maternal ideal with the representation of the embodied—and potentially eroticized—female subject.’[3] Consequently, the idealised mother loomed large in Victorian fiction, but more often than not these texts feature mothers who are absent, or dead: psychologically overwhelming, but physically absent. Although recent developments in historical thought suggest that the maternal mortality rate in the nineteenth century was not as high as was once assumed, it is true that the medicalization of childbirth brought with it an epidemic of puerperal fever, or ‘childbed fever’. Maternal death in nineteenth-century fiction, however, far exceeded the actual rates of childbed death, which consistently remained well below 1%. Dever and others have linked this trope to Freudian psychoanalysis, and the destabilising effect the idea of the sexual maternal body could have upon the identities of children raised in a culture that linked female sexuality with hysteria and disorder. In nineteenth-century narrative, the tragic death of the mother ensured her virtue: free of the troubling aspects of her embodied existence, she could fulfil the symbolic role society required of her.

Adrienne Rich

Adrienne Rich

In a letter of 1866, George Eliot referred to her fiction as an attempt to ‘make certain ideas thoroughly incarnate, as if they had revealed themselves to me first in the flesh and not in the spirit’. This notion of ‘incarnation’ is undermined, however, by the fact that Eliot largely avoids any engagement with matters of the flesh. Indeed, Eliot seems to want to avoid biological maternity altogether. In her novels mothers either die young— often in childbirth— or are comically incompetent or grotesque and replaced by substitutionary maternal figures who are able to provide moral guidance uncomplicated by the problem of physical maternity. The few female protagonists in her work who do go on to have children have to sacrifice something of themselves in the process: Dorothea Brooke, the heroine of Middlemarch (1871-1872), lives happily with her husband and two children, but we learn in the novel’s final passage that although her husband is an active social reformer, Dorothea’s own ambitions remain unfulfilled. It could be argued that the reason for the dearth of maternal characters in Eliot’s novels is the narrative dead end the circumstances of maternity provided for so many nineteenth-century women. We’ve got a long way to go before we can honestly say that this isn’t still the case for many women today. In Of Woman Born, Adrienne Rich— writing in 1986— comments on the metaphorical resonance that death in childbirth retains:

Even in a place and time where maternal mortality is low, a woman’s fantasies of her own death in childbirth have the accuracy of metaphor. Typically, under patriarchy, the mother’s life is exchanged for the child; her autonomy as a separate being seems fated to conflict with the infant she will bear. The self-denying, self-annihilating role of the Good Mother (linked implicitly with suffering and with the repression of anger) will spell the “death” of the woman or girl who once has hopes, expectations, fantasies for herself—especially when those hopes and fantasies have never been acted on.[4]

The valourised, idealised Good Mother is a trope that works against women, not for them. If we want to change it, we need to understand where it came from, and how inherently linked it is to our economic and political systems, and we need more ‘preggies’ like Beyoncé to ‘flaunt’ their maternity in a way that includes, rather than denies, their autonomous, sexual identities.

[1] Adrienne Rich, Of Woman Born: Motherhood as Experience and Institution (London: Virago, 1976, reissued with a new introduction by the author [1986], reprinted 1992), p.128.

[2] Ruth Perry, ‘Colonising the Breast: Sexuality and Maternity in Eighteenth-Century England’, (Journal of the History of Sexuality,Vol. 2, No. 2, Special Issue, Part 1: The State, Society, and the Regulation of Sexuality in Modern Europe (Oct., 1991), pp. 204-234), p. 205.

[3]Carolyn Dever, Death and the Mother from Dickens to Freud: Victorian Fiction and the Anxiety of Origins (Cambridge: CUP, 1998), p. 19.

[4] Rich, p.166.

Assisted Reproductive Technologies and Irish Law

Who’s left holding the baby now? Assisted Reproductive Technologies and Irish Law

by Sarah Pryor

The rapid rate of development and expansion in usability of genetic technologies in the past decade is both a cause for celebration and a cause for concern.

There is an impetus on law and policy makers to act responsibly in creating and implementing legal tools to aid in the smooth operation and integration of these technological advances into society in order to mitigate the possibility of society enduring any negative impact from the existence and use of technologies in this growing area.

The question asked here is; do assistive reproduction technologies challenge the traditional concepts of parenthood generally, and motherhood specifically, and what impact does this have on Irish law and society?

Quite simply put, the answer is yes, these emerging technologies do challenge traditional familial concepts and norms. The answer as to what impact this has on Irish law and society is exceedingly more complicated.

Ethical concerns

Reproduction is becoming increasingly more medicalised, geneticised and commercialised. This has the potential to diminish the human condition and damage the human population.[1] In a time of scientific, social and legal change it is inevitable that there will be periods of uncertainty. It is under these conditions of uncertainty that identity and ethics must be debated, and boundaries must be established in order to ensure that no negative experiences come to the broader population due to the advancements being made in the area of assisted reproduction.

The ethical concerns surrounding the increased medicalisation of human reproduction range greatly.[2]

The most challenging element of reproductive technologies is the fact that the issues being debated are deeply personal and sensitive, meaning that no one experience is the same and as such, there is difficulty in establishing a standard of practice, as well as a legally and ethically balanced acceptance of the use of these procedures. These difficulties are inherent to discussion surrounding human reproduction.

Assisted Human Reproduction in Ireland

Assisted Human Reproduction (AHR) was not formally recognised as an area in need of governmental oversight until the year 2000 when the Commission for Assisted Human Reproduction, herein referred to as ‘the Commission’, was established and the need for comprehensive, stand alone, legislation in this area was recognised.[3]

The Commission and subsequent report were welcomed as a move towards the recognition of a set of newly emerging social norms in Ireland; both in terms of medicine and reproductive technologies and also in terms of the traditional nuclear family and the growth towards new familial norms. However, following the publication of the 2005 report there was little done in the way of proactive implementation of the set out recommendations.[4]

Political conversation centres around the disappointment that questions surrounding the protocol of AHR services and their use must be addressed via judicial channels and that there is not legislation in place to counteract the need to use the Irish Court System to get answers.[5]

The lack of legislation in this area means that the only avenue for the guidance of medical practitioners comes from the Irish Medical Council “Guide to Professional Conduct and Ethics for registered medical practitioners”.[6] Several cases in recent years have been brought to the High Court and Supreme Court in order to solve the maze this legal vacuum leaves patients struggling through.[7] These cases, as recently as 2014, have highlighted the necessity for legislation in the area in order to protect all parties involved.

The role of religion

It is important to recognise the cultural history of Ireland and the importance of the social and political role of the Catholic Church for many years. Older Irish generations were reared in a country in which contraception was illegal and women did not work once they were married as their societal role was in the home. Newly emerging technologies, such as surrogacy, further challenge these traditional values.

There is an unfortunate pattern of political and religious control over a woman’s right to reproduce and the conditions in which it is ‘right’ for a woman to have a baby. For a long time in Ireland, there was no real separation of church and State. The ramifications of this have rippled throughout Irish history and up to the present day – no more so than in the area of the reproductive rights of women.

Parallels with the Repeal the 8th campaign 

Although distinctly different from the abortion debate, and the argument for the repeal of the 8th amendment, certain parallels can be drawn in how the government has responded to calls from various groups to provide guidance in the area of assisted reproduction and how these calls have been largely brushed to the side. On the introduction of the Children and Family Relationships Act 2015, Minister for Justice & Equality Francis Fitzgerald removed any reference to surrogacy because it was too large an issue to merely be a feature of a more generalised bill, so there is indication that positive movements are being made in this area – the question is when will they actually be formulated into real, working policies, laws and protocols?

ARTs and the Marriage Equality referendum

Until 2015, marriage in Ireland was exclusively available for heterosexual couples. The 34th Amendment of the Irish Constitution changed this, effectively providing for a more equal society in which traditional Irish values towards marriage were replaced with a more accepting stance, something which was voted for by the Irish public through a referendum.[8]

The gravity of such a change in Irish society has implications beyond just marriage. Laws regarding areas such as adoption were relevant only to the married couple and, within that context, this meant only heterosexual couples. Irish family law was written with the traditional ‘mother, father and children’ family in mind. It is fair to say that family dynamics have changed significantly, and the movement away from traditional concepts of family is increasing. With the passing of the Marriage Referendum, marriage in the context of law and society has taken on a new meaning, and the symbolic nature of this recognition of a new familial norm is plain to see. The Irish electorate voted for this, and public consultations on Assisted Reproductive Technologies (ARTs) have illustrated the support of the Irish people for ARTs, and for legislation regulating their use – and yet, still there is none.

ARTs are used by heterosexual and homosexual couples alike. The Children and Family Relationships Act 2015 has made movements towards acknowledging new familial norms in Ireland and was a welcomed symbol of the future for Irish society as increasingly liberal and accepting. Although many pressing issues are not addressed within the Act, such as surrogacy, the support for the enactment of new measures regarding familial relationships is a deeply reassuring acknowledgement of the changing, evolving nature of Irish society and their views towards non-traditional family units. While this is to be welcomed, it simply doesn’t go far enough.

The role of the mother

One area that has not been addressed in any significant way is the greatly changed role of the mother.

Mater semper certa est – the mother is always certain. This is the basis on which Irish family law operates and it is this historical, unshakeable concept that is being shaken to its core by the emergence of ARTs.

Traditional concepts of motherhood are defined solely through the process of gestation.[9] A birth mother, in the context of Irish law, is the legal mother.[10] This has remained a point of contention in the Irish courts, demonstrated in the 2014 Supreme Court case addressing the rights of a surrogate mother to her genetically linked children to whom she did not give birth. Denham CJ addressed the ‘lacuna’ in Irish law, emphasising the responsibilities of the Oireachtas, in saying that:

“Any law on surrogacy affects the status and rights of persons, especially those of the children; it creates complex relationships, and has a deep social content. It is, thus, quintessentially a matter for the Oireachtas.”

Chief Justice Denham further stated that:

“There is a lacuna in the law as to certain rights, especially those of the children born in such circumstances. Such lacuna should be addressed in legislation and not by this Court. There is clearly merit in the legislature addressing this lacuna, and providing for retrospective situations of surrogacy.”[11]

The emergence of ARTs as common practice, particularly regarding egg and sperm donation, surrogacy and embryo donation, have created a new concept of parenthood, and more specifically motherhood.

There are deeply segregated emerging views over who exactly is the legal mother, and the social mother, the rights that each participant has, and who is responsible for the donor or surrogate child.

Whilst some of these issues were addressed in both the Commission Report and the 2013 RCSI Report, such as the right of the donor child to the information of their donor, neither delve deeply into the implications of such medical processes on concepts of motherhood and parenthood.

Three fragmented concepts of motherhood now exist; social, gestational and genetic.[12] Although there are established ideologies of parental pluralism within society regarding adoption, the nature of the situation in which a child is born though the use of ARTs is fundamentally different from an adoption agreement which is accounted for in Irish law.

Feminist views on ARTs

Feminist views differ greatly in their resounding opinions on the emergence of assistive reproduction technologies. Arguments are made opposing ARTs as methods of increased control over a woman’s reproduction through commercialisation and reinforcement of the pro-natalist ideologies.[13] Others argue in favour of ARTs in stating that their development allows women more freedom over their reproductive choices and enables women to bear children independently of another person and at a time that is suitable to her; an example of this being the use of IVF by a woman at a later stage in her life.[14]

These complexities exist before even considering the social and legal role of parents in same sex relationships – what relevance does the role of the mother have for a gay couple? What relevance does the role of a father have for a lesbian couple? Does the increasing norm of homosexual couples having children via surrogate mitigate any need for these socially constructed familial roles and highlight the irrelevance of these roles in modern society? The same questions can be asked of a single man or woman seeking to have a child via surrogate – should a person only have a child if they are in a committed relationship? Surely not, as single parents currently exist in Ireland, have done so for some time, and are raising their children without objection from society or the state.

‘The law can no longer function for its purpose’

Regardless of where one’s stance lies on the emergence of these technologies, it is undeniably clear that their use is challenging normative views and practices of parenthood. The traditional, socially established norms are shifting from what was once a quite linear and nuclear view. ARTs allow for those who previously could not have genetically linked children to do so via medical treatments. It is in this way that the situation under current Irish law is exacerbated, and the law can no longer function for its purpose.

Something needs to be done, so that whoever wants to be, can be left holding the baby!

[1] Sarah Franklin and Celia Roberts, Born and Made: An Ethnography of Preimplantation Genetic Diagnosis (Princeton University Press 2006).

[2] Sirpa Soini and others, ‘The Interact between Assisted Reproductive Technologies and Genetics: Technical, Social, Ethical and Legal Issues’ (2006) 14 European Journal of Human Genetics.

[3] David J Walsh and others, ‘Irish Public Opinion on Assisted Human Reproduction Services: Contemporary Assessments from a National Sample’.

[4] Deirdre Madden, ‘Delays over Surrogacy Has Led to Needless Suffering for Families’ Irish Independent (2013) <https://www.nexis.com/auth/bridge.do?rand=0.4949951547474648&gt; accessed 25 June 2016.

[5] Roche v. Roche 2009

See also, MR & DR v. An tArd Chlaraitheoir 2014

[6] David J Walsh and others, ‘Irish Public Opinion on Assisted Human Reproduction Services: Contemporary Assessments from a National Sample’.

[7] See Roche v. Roche 2009. See also MR & DR V. An tArd Chlaraitheoir 2014

[8] 34th amendment of the Constitution (Marriage Equality) Act 2015.

[9] Andrea E Stumpf, ‘Redefining Mother: A Legal Matrix for New Reproductive Technologies’ (1986) 96 The Yale Law Journal 187 <http://www.jstor.org/stable/pdf/796440.pdf?_=1471277905944&gt; accessed 16 June 2016.

[10] See, MR And DR v an t-ard-chláraitheoir & ors: Judgments & determinations: Courts service of Ireland [2014] IESC 60.  [S.C. no.263 of 2013]

[11] Ibid, para 113, para 116.

[12] SA Hammons, ‘Assisted Reproductive Technologies: Changing Conceptions of Motherhood?’ (2008) 23 Affilia 270 <http://claradoc.gpa.free.fr/doc/254.pdf&gt; accessed 4 August 2016.

[13] SA Hammons, ‘Assisted Reproductive Technologies: Changing Conceptions of Motherhood?’ (2008) 23 Affilia 270 <http://claradoc.gpa.free.fr/doc/254.pdf&gt; accessed 4 August 2016. See also, Gimenez, 1991, p.337

[14] See, Bennett, 2003 and Firestone, 1971

Detecting Parkinson’s Disease with your mobile phone

DETECTING PARKINSON’S DISEASE BEFORE SYMPTOMS ARISE

by Reham Badaway, in collaboration with Dr. Max Little.

So, what if I told you that in your pocket right now, you have a device that may be able to detect for the symptoms of a brain disease called Parkinson’s, much earlier than doctors themselves can detect for the disease? I’ll give you a minute to empty out the contents of your pockets. Have you guessed what it is? It’s your smartphone! Not only can your trusty smartphone keep you in touch with family and friends, or help you look busy at a party that you know no-one at, it can also detect for the very early symptoms of a debilitating disease. One more reason to love your smartphone!

What is Parkinson’s disease?

So, what is Parkinson’s disease (PD)? PD is a brain disease which significantly restricts movement. Some of the symptoms of PD include slowness of movement, trembling of the hands and legs, the resistance of the muscles to movement, and loss of balance. All of these movement problems (symptoms) are extremely debilitating and affect the quality of life for those diagnosed with the disease. Unfortunately, it is only in the late stages of the disease, i.e. when the symptoms of the disease are extremely apparent, that doctors can confidently detect PD. There is currently no cure for the disease. Detecting the disease early on can help us find a cure, or find medicines that aim to slow down disease progression. Thus, methods that can detect PD before doctors themselves can detect for the disease, i.e. in the early stages of the disease, are pivotal.

Smartphone sensing

So, how can we go about detecting the disease early on in a non-invasive, cheap and easily accessible manner? Well, we believe that smartphones are the solution. Smartphones come equipped with a large variety of sensors to enhance your experience with your smartphone (Fig 1). Over the last few years, abnormal characteristics in the walking pattern of individuals with PD have been successfully detected using a smartphone sensor known as an accelerometer. Accelerometers can detect movement with high precision at very low cost, making them perfect for wide-scale application.

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Fig 1: Sensors, satellites and radio frequency in Smartphones

Detecting Parkinson’s disease before symptoms arise

Interestingly, subtle movement problems have been reported in individuals with a high risk of developing PD using sensors similar to those found in smartphones, specifically when given a difficult activity to do such as walking while counting backwards. Individuals at risk of developing the disease are individuals who are expected to develop the disease in the later stages of their life due to say a genetic mutation, but have not yet developed the key symptoms required for PD diagnosis. The presence of subtle movement problems in individuals with a high risk of developing PD indicates that the symptoms of PD exist in the early stages of the disease progression, just subtly. Unfortunately, these subtle movement problems are so subtle that individuals at risk of developing PD, as well as doctors, cannot detect them – so we must go looking for them. It is crucial that we can screen individuals for these subtle movement problems if we are to detect the disease in the early stages. The ability of smartphone sensors to detect the subtle movement problems in the early stages of PD has not yet been investigated. Using smartphones as a screening tool for detecting PD early on will mean a more widely accessible and cost-effective screening method.

Our solution to the problem

We aim to distinguish individuals at risk of developing PD from risk-free individuals by analysing their walking pattern measured using a smartphone accelerometer.

How does it work?

So, how would it work? Users download a smartphone app, in which they are instructed to place their smartphone in their pocket and walk in a straight line for 30 seconds. During these 30 seconds, a smartphone accelerometer records the user’s walking pattern (Fig 2).

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Fig 2: Smartphone records user walking

The data collected from the accelerometer is then downloaded on to a computer so we can examine the presence of subtle movement problems in an individual’s walking pattern. However, to ensure that the subtle movement problems that we observe in an individual’s walking pattern is due to PD, we aim to simulate the user’s walking pattern via modelling the underlying mechanisms that occur in the brain during PD. If the simulated walking pattern matches the walking pattern collected from the user’s smartphone (Fig 3), we can look back at our model of the basal ganglia (BG)- an area in the brain often associated with PD – to see if it is predictive of PD.

 

reham-3

 

If it is predictive of PD, and we observe subtle movement problems in the user’s walking pattern, we can classify an individual as being at risk of developing PD. Thus, an individual’s health status will be based on a plausible link between their physical and biological characteristics. In cases in which the biological and physical evidence do not stack up, for example when we observe subtle movement problems in an individual’s walking pattern but the information drawn from the BG is not indicating PD, we can dismiss the results in order to prevent a misdiagnosis. A misdiagnosis can have a significant impact on an individual’s health and psychology. Thus, it is pivotal that the methods that we build allow us to identify scenarios in which the model is not capable of accurately predicting an individual’s health status, a problem which a lot of current techniques in the field lack.

To simulate the user’s walking pattern, we aim to mathematically model the BG and use it as input into another mathematical model of the mechanics of human walking. The BG model consists of many variables to make it work. To find the values for the different variables of the BG model such that it simulates the user’s walking pattern, we will use a statistical technique known as Approximate Bayesian Computation (ABC). ABC works by running many simulations of the BG model until it simulates a walking pattern that is a close match to the user’s walking pattern.

Ultimately our approach aims to provide insight into an individual’s brain deterioration through their walking pattern, measured using smartphone accelerometers, in order to know how their health is changing.

Benefits

As well as identifying those at risk of developing PD from healthy individuals, our approach provides the following benefits:

  • Providing insight into how the disease affects movement both before and after diagnosis.
  • Identifying disease severity in order to decide on the right dosage of medication for patients.
  • Tracking the effect of drugs on symptom severity for PD patients and those at risk.

Application

Apple recently launched ResearchKit, which is a collection of smartphone applications that aims to monitor an individual’s health. Companies such as Apple are realising the potential of smartphones to screen for diseases. The ability to monitor patients long-term, in a non-invasive manner, through smartphones is promising, and can provide a more accurate picture of an individual’s health.

Advances in smartphone sensing are likely to have a substantial impact in many areas of our lives. However, how far can we go with monitoring people without jeopardizing their privacy? How do we prevent the leakage of sensitive information collected from millions of people? The growing evolution of sensor-enabled smartphones presents innovative opportunities for mobile sensing research, but it comes with many challenges that need to be addressed.

Scotland’s health inequalities – a matter of social injustice

by Breannon Babbel.

What happens when the overall health of a population improves, but groups at the bottom fail to keep up? Dramatic health inequalities, where your socioeconomic status is fundamentally related to how long you can expect to live. Health inequalities affect Scotland overall, but are especially pernicious in Glasgow due to its high concentration of socioeconomic deprivation, mixed in with more affluent neighbourhoods. For example, within just a 6-mile stretch you can see life expectancy drop almost 14 years for men and 9 years for women. Since there is no law of nature that dictates low-income groups should have worse health than those above them, health inequalities represent an issue of social injustice that demands action.

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Data mapping showing Glasgow’s high concentration of Scotland’s most deprived 20% around the urban centre, 2012 (Captured using Alasdair Rae’s site, https://sites.google.com/site/scotdep2012/)

The role of general practice

It’s certainly crucial to address wider social and economic factors (such as income inequalities) to successfully tackle health inequalities, but the role of general practice and health care services—especially in deprived areas—should not be ignored. This is because unhindered access to culturally appropriate health care can slow the progression of disease and reduce the effects of illness, thus helping to alleviate existing health inequalities.

The effects of deprivation, however, can be particularly challenging for GPs working in these areas. Not only do individuals in deprived areas face poorer health outcomes than those in affluent areas, they’re also more likely to suffer from multiple illnesses at a much earlier age, with the rate of mental illness almost twice as likely in the most deprived areas. These challenges are further aggravated by problems related to social deprivation such as higher levels of unemployment, fewer financial and other material resources, and higher rates of addiction. The result is an element of complexity so that in the context of a 10-minute GP consultation, GPs working in deprived areas face a major challenge in adequately addressing all the problems their patients show up with.

BR3Possilpark Health Centre – Location of Scotland’s 1st, 4th and 25th most deprived practices

‘Going the extra mile’

Within medicine there’s an inherent social responsibility suggesting GPs have obligations not only to individual patients, but also to the communities in which they practice. But do GPs actually view themselves as advocates in tackling health inequalities and, if so, how do GPs view themselves ‘going the extra mile’ to help their patients? These overarching questions set the framework for my PhD research conducting interviews with 24 GPs working in Scotland’s most deprived practices. Harking back to 19th century German physician, Rudolf Virchow’s description of physicians as ‘natural attorney(s) of the poor’, findings very much revealed an advocacy role.

Specifically, GPs saw themselves as part of the solution to addressing health inequalities in deprived areas through various ways, including strengthening community linkages and advocacy on behalf of their patient populations. Almost all felt a responsibility in some way to help strengthen connections with other services and resources within the communities they practice. This is because treating medical illness is only part of the solution for patients in deprived areas. Another major part of the solution involves addressing social factors, which are often out of GPs’ control.

As one GP put it, “we don’t have the resources to give people jobs or give people better housing, or more money, or deal with child poverty… we can only advise what we see and what the effects of that is on patients health.”

Linking practices to social services within the community is integral to strengthening health systems and tackling health inequalities.

Advocacy in the ‘Deep End’ of Scotland

 Beyond building linkages within the community, a subset of the GPs also felt responsible for lobbying directly to the government for policy change as a “frontline voice to what’s actually happening” in deprived communities. This is because they witness first hand the damaging effects things like welfare reform and austerity has on their patients. One of the key elements to the organisation of this advocacy has been the group ‘General Practitioners at the Deep End’. The Deep End group first convened almost 7 years ago and represents GPs working across the 100 most deprived practices in Scotland.

The Deep End group has been influential in not only providing a platform for GP advocacy, but also for enabling collaboration between health and social services. This is evident in various projects including:

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  • The Care Plus Study– a randomized control trial which examined the effect additional patient consultation time has on patients in primary care.
  • The Links Worker Programme– a project exploring the use of a practice attached links worker, to help connect a practice’s patient knowledge to available community resources.
  • Govan Social & Health Integrated Partnership (SHIP) Project– a project focusing on integrated care between general practice and social work via extended consultations, extra GP time and leadership, attached social workers and support for multidisciplinary team meetings.

One of the GPs noted the Deep End group had been particularly successful in “[getting] the ear of the government” through lobbying directly to Scottish Parliament, and government funding for these projects is evidence of this. While the success of the group is partly due to academic support from the University of Glasgow, it mostly boils down to its GP-led format. The group is driven by frontline experience and GPs are the ones setting the agenda regarding the needs of their practice population.

One of the more topical measures of success, however, remains to be seen. This relates to recent findings from a 2015 study showing that practices in areas of high deprivation have an increase in consultation rates per patient, but no increase in funding as a result. With the Scottish GP contract currently in negotiations for 2017, there is potential to ensure practice funding levels match need. Ensuring funding levels are distributed according to need is perhaps one of the most important factors for Scotland’s general practice to effectively tackle health inequalities. It also potentially demonstrates just how successful the Deep End group has been in ‘getting the ear of the government’.

Regardless of changes in the 2017 GP contract, this research found that GPs working in deprived areas see themselves going ‘beyond the call of duty’ to make a difference in the lives of their patients and patient populations. GPs working in deprived areas should be encouraged to use their professional clout to not only strengthen local communities, but also to advocate against policy change—including both health and social—that might potentially affect their patients.

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Reflections on conducting research in another country

I’m not originally from Scotland and four years ago began my PhD journey conducting research in an entirely unfamiliar health care context. My home country, the United States, is currently undergoing a major health reform, which has the potential to make huge strides towards achieving universal health coverage. Many countries, including the UK, have taken the necessary steps to 1) assert health care as a basic human right and 2) establish a health system in which everyone has access to services without incurring financial hardship. Thus, conducting research under a universal health context was the primary draw to study in Scotland. It’s also been enlightening in demonstrating that universalism is not enough, as Scotland’s rise in health inequalities over the past 50 years signifies an insufficient focus on the most deprived areas.

In terms of the U.S., it’s not a matter of copying another country’s health system, but finding a way to achieve universal health coverage that’s politically, socially, and culturally acceptable (no small feat by any means!). The same can be said for general practice in Scotland’s deprived communities. The solution isn’t applying a blanket approach to practices in deprived communities across Scotland, but providing flexibility and sufficient resources to allow practices to develop innovative solutions that meet the needs of their practice population.

BR5

Waiting area for Wester Hailes Medical Practice, Scotland’s 19th most deprived practice