Tackling the ethical approval process

Forms over function: Ethics, ethnography and the NHS

by Carol Robinson

At times last year I forgot that I was doing a PhD. It’s not that I was having a wild time as a student. No, by 9am every day I turned up to the office my department has kindly provided, settled down at my desk and worked solidly until some point after 5pm. Some of that time I’d be keeping on top of email, or attending departmental meetings, but mostly, I was working. Twitter doesn’t distract me, I had an organised weekly list of things to do that I worked through, and things were progressing nicely, thank you.

So why did I forget that I was working towards a PhD? Because for most of that time everything I did was aimed at getting ethical approval for my research. So it was almost a shock to look up and remember that wasn’t really my goal. My goal is to do the PhD research, to contribute to human knowledge and understanding, and to do it in a way that improves people’s lives. For a while however, compiling what became 91 pages of ethics forms plus supporting documents and all the bureaucracy that goes with that completely eclipsed the research.

I always knew I’d need to get ethical approval for my work. What I didn’t appreciate was how time-consuming, frustrating and complicated this would be. I used to listen to other people’s stories of wrestling with UK’s Integrated Research Application System, or with the NHS Health Research Authority’s byzantine processes and think either that they were exaggerating for effect or that perhaps their project wasn’t, well, good enough. I’d had approval from the prison service for England and Wales for two previous research projects; how hard could it be? I now apologise whole-heartedly that these thoughts even crossed my mind.

I did make life harder for myself by wanting to research dying prisoners, thus requiring both health service and prison service approval, as well as that of my University. The prison service process was fairly straightforward and familiar. The real trouble was with the NHS processes, and with the relationship between the three bodies. What kept me going for several weeks, as I tried to untangle the mass of acronyms and synonyms involved, was the thought that I was gaining useful experience. At the end of all this, I thought, I’ll be able to put on my CV that I understand the process, know how to fill in the form and could liaise with a health Research Ethics Committee. Not true. The process is so capricious that all such an entry in my CV would prove is that I once had the mental fortitude to see an application through to its conclusion.

Although my colleagues will tell you I sighed out loud quite a bit, I did make it through the time when an overnight update to the IRAS website hived my answers off into two separate forms, one of which I couldn’t see. I didn’t scream when I discovered just before submission that this should be changed back to one form. I stayed cheerful as my participant information sheet, carefully written to suit people not that keen on reading, expanded to yet another page with all the extra information I was asked to include. I only muttered a modest amount when asked to add the (to the participants) totally meaningless IRAS reference number to it. I maintained my outward equilibrium whilst I confirmed I would not be doing things I’d never thought of (wearing clerical dress was my favourite such request, closely followed by audio-recording outside of interviews). But I confess my heart did sink when someone I was relying on to understand what should happen next said this would be a learning process for them too.

Being a reasonable person, I did appreciate that part of the difficulty was that I was having to fit getting approval for sociological research into a process intended for clinical trials. The mismatch only seems to be partly recognised by the bodies responsible. So, whilst there’s a protocol template to complete aimed at qualitative research, I still had to say I wasn’t using ionising radiation or using human tissue samples. And whilst there are ways to amend the project once it’s been approved, there’s no appreciation that good sociological research is often iterative. Instead, there’s the assumption that you will know all possible scenarios in advance. With this comes an assumed relationship to the research participants; they are to be the subjects, not the co-creators of research knowledge. There is no scope for an understanding of ethical research that deviates from a generic (clinical) ideal, and consequently, the best of a discipline’s specific characteristics and of its newer research methodologies can be lost. I say newer, but in practice even my well established chosen ethnographic methodologies sit uncomfortably with the process of getting ethical approval from a health research authority.

There was a tendency in the guidelines provided to use language in unexpected ways. Have you ever had that experience of all the words making sense individually, but being incomprehensible when put together? I found myself trying to draft emails to effectively ask “so if ‘host organisation’ doesn’t mean ‘the organisation hosting the research’, what does it mean?” I struggled, along with my supervisors, and it turned out, the ethics committee staff, to understand what the REC had wanted when it asked whether I had an ‘honorary contract’. Later on, the REC asked if the scientific validity of the study has been confirmed independently of the academic supervisors, giving as an example of how this might be achieved “a University PhD review process”. None of us, not my academic supervisors, not the university ‘sponsor’ that I’d discovered along the way was also needed, knew what this meant. We were stumped, and resorted to gently approaching a professor elsewhere to see if they could provide such an independent scientific review, and quickly. In the end, this was not needed –all that was meant was would the University’s ethics committee be looking at it. Yes, of course.

There were funny moments too. Having had my application reviewed by a Research Ethics Committee that met in Essex, I then discovered how similarly I pronounce ‘Ethics’ and ‘Essex’, on the phone, to a poor, kindly person trying to understand which ethics committee had looked at it. Eventually, I said, “the one that met in Chelmsford” and we moved on. Having three ethics committees look at your work is not fun. As things are, it’s inevitable for research such as this, but unsurprisingly their expectations are not always compatible. The prison service doesn’t want any contact details for external people, such as academic supervisors, included on Participant Information Sheets; the NHS expects this. The University wants email addresses only; prisoners don’t have email. The NHS REC regarded the notices that prison governors would issue to let prisoners and staff know about the research as ‘posters’ that the REC should scrutinise, so needed the final text agreeing before I could get their approval – 6 months in advance of the governor issuing the text. Prison governors are incredibly busy people, so I am indebted to them for having calmly accepted this.

There is, outwardly, plenty of advice available on NHS websites. Much of it is out of date, hard to find, or impossible to understand. There are flow charts describing a parallel world, ‘start here’ guides buried beyond discovery, and directories that are out of date. Lovely, kind and supportive staff within the NHS R&D offices or working with RECs do their best, but if your project is unusual, there are things they can’t be expected to know, such as that there’s a limited number of Health RECs who will look at prison applications, until it’s nearly too late.

I’m not alone in this. In my struggle to understand the process, I came across numerous articles by academics similarly venting their frustrations, including one that fairly calmly reflecting on the problems, before revealing that their own project had spent the entire initial research budget trying to get permissions for research. Wiser people before me have also found that processes designed for quantitative-based medical interventions and clinical trials cannot adjust to the needs of qualitative research. And yet not much seems to have changed. My gripes may seem small, but behind them is a bigger issue, that of the imbalance of power between researchers and research ethics committees and the lack of accountability of the people, some experts, some lay people, appointed to make such important decisions.

So now I have all the ethical approvals I need, 10 months after I first starting filling in the forms, I’m remembering fondly why I’m here. It comes in flashes; the possibility of time to open that new book I’ve been eyeing up, something on the news that reminds me of the relevance of my research interests, a chance conversation with a colleague. Best of all was a recent conversation with a senior manager at one of the prisons I’ll be visiting for fieldwork. We’d not spoken before, but within minutes she’d reminded me why I’m doing this, why it matters that I’ve survived through all these hurdles. Out there are people who are doing their best in tough circumstances, and good quality research may just be able to help them. I’m looking forward to getting on with it.

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Austerity, women and health inequalities in the UK

by Amy Greer Murphy, Durham University

My PhD is part of a five year research project entitled ‘Local Health Inequalities in an Age of Austerity: The Stockton-on-Tees study’. It’s a mixed method case study exploring the localised impacts of austerity on health. My role is examining the experiences of women living in Stockton using qualitative research.

A few key terms

Austerity refers to attempts to reduce government deficits through spending cuts and sometimes tax increases. Across Europe, austerity was implemented in many countries, such as Greece and Ireland, as a precondition of receiving bailouts in the wake of the financial crisis of 2008. In the UK, a major restructuring of the public sector and welfare system has been undertaken since 2010.

Neoliberalism refers to the application of free market principles to public policy. It has been enacted in the UK since Thatcher’s Conservative government came to power in the 1980s and has comprised of deregulation (e.g. of the banking and financial system), privatisation (e.g. of bus and rail services) and, more recently, austerity (e.g. extensive welfare reforms).

‘Health inequalities’ refer to disparities in life expectancy and years of health life (‘mortality’ and ‘morbidity’) within and across nations. There is a gradient in all countries – those with more socio-economic resources also have better health (Marmot, 2010). In the UK, health inequalities are widening since austerity began. Schrecker and Bambra (2015) have referred to the process of widening health inequalities and liberalised economic and social policies as a ‘neoliberal epidemic’.

Austerity and inequality in the UK

The UK is a large country, and one of great social contrasts. The contrasts that are relevant to my research are related to inequality of opportunity, resources, health, and the government policies, political decisions and historical legacies that bring these about. The North East has experienced a huge restructuring of its’ social landscape in recent decades. Mining, heavy industry and manufacturing have all but ceased to operate there. The jobs that once provided decent incomes and rooted people to their communities, providing clear routes through the lifecourse and class allegiances, have slipped away. In their place are zero hour contracts in care homes and nurseries, seasonal work in factories and as agency staff providing security in shopping centres.

Through this research process I have tried to understand what neoliberalism and austerity feel like if you’re not on the winning side of them, focussing on gender and class. I’ve then tried to see the wider connection to globalised economies and deregulated financial markets.

Stockton-on-Tees

One of the ways austerity is affecting places and people differently is through health. In Stockton-on-Tees, the gap in life expectancy for men is the largest in all of England, at 17.3 years, and one of the widest for women, at 11.4 (Public Health England, 2015). If you are a man born in one of the wealthier, typically less urbanised parts of Stockton you can expect, on average, to live 17.3 years longer, and more of those years in good health, than a man born just a short walk away, in a more built-up and less well-off part of town. You are also at a higher risk of cardio-vascular disease, obesity, cancer, mental health issues, suicide, alcoholism, to be more socially isolated, have a worse paying, precarious job or no job at all, and to be at the mercy of an increasingly retrenched welfare state for your income and livelihood. The picture for women is similar, but different in crucial ways I will explore later.

This, of course, isn’t the picture for everyone in Stockton; I don’t want to paint a doomsday caricature (Benefits Street, the Channel 4 show, made a noble attempt at that in 2014 with their ‘poverty porn’ foray into life on Kingston Road). Stockton is steeped in a proud industrial legacy, is surrounded by beautiful dales and hills, has a vibrant town centre, and is home to thousands of people of all kinds who are creating thriving and enduring communities. Undeniably, however, government policy is making the lives of an increasing number of its residents tougher.

The research topic

Women face a distinct set of risks under austerity, as their lives, choices and opportunities often play out differently. This led me to develop my research project, to be carried out with mothers from across the borough. I wanted to understand what the experiences are of being a woman living in a place like Stockton – what can they tell us about other similar places that have experienced stark deindustrialisation and withdrawal of resources and traditional routes to employment and social stability? What does it feel like to live through welfare reform, as a mother, with enough money or very little, in an area with lots of different inequalities?

The methods

The research design was informed by the work of Sociologists who have used their skills to bring to the academic and policy world narratives that are otherwise silenced – quite often the voices of women. Berverley Skeggs (1997), wrote about class and gender and respectability in an area of England not so far from Stockton, Ann Oakley (1979; 1993) spent years with mothers asking them what they thought about housework, women’s health and becoming a mother, and Arlie Hochschild (1989) delved into the lives of women trapped in the double- or triple-bind of work, caring for children and elderly relatives. The methods I used are similar to theirs, and ‘qualitative’, meaning they are designed to explore diverse social worlds and understand why certain groups of people or individuals make choices or live in certain ways, or why their lives are presented in a certain light. I had a methodology (system of methods) and sampling strategy (idea of why I wanted to contact, and why). Unlike some quantitative social research or scientific experiment, or the research wasn’t designed with representativeness or generalisability in mind.

I used ethnography, or participant observation; I spent 16 months at a women’s group where I gained friends and mentors and learned about being woman living on a low income in Stockton. I also interviewed 15 women, 14 of whom are mothers, from a wide variety of socio-economic backgrounds and from many different walks of life. I recruited participants through the local Sure Start centres, Twitter, Thrive, the anti-poverty charity I spent a lot of time at, and through snowball sampling (asking people I met if they could recommend someone, or pass on my details). I offered a voucher as a thank-you and recorded my interviews.

Some findings

Continuing austerity and the decline of opportunities: For respondents and their wider networks, there is a huge concern about the likely continuation of austerity and what that might mean for families and communities. We spoke about diminishing opportunity and prospects, the long-term decline of services, the quality and availability of housing and work in the area.

The desire to ‘just be a mam’: Respondents found their roles as mothers and carers increasingly devalued, with the expectation that caring work should be provided by the market and that they should seek formal work as a primary source of income. However, quality work is unavailable, childcare unaffordable, and an important source of identity formation, their role as carers and mothers, diminished under austerity.

Mental health: It became increasingly obvious as I spent more time in the field that the deterioration of participants’ mental health and sense of wellbeing was stark. Discussions of everyday struggles with depression, anxiety and serious bouts of post-natal depression were worryingly frequent. Furthermore, long-term physical health and chronic pain issues were part and parcel of life for many of the women I spent time with, symptoms of a lifetime of stress, poor quality housing and other inequalities (Mattheys et al. 2015).

Conclusion

Underpinning my research is the understanding that women, particularly mothers, face a set of distinct risks under austerity, through labour market changes, reliance on the welfare system and the public sector. They are employed in higher numbers in the public sector, and so more vulnerable to job losses there, and more likely to be underemployed or in low-paid work in ‘feminised’ sectors. They may also face maternity discrimination in their workplace, experience a large gender pay gap and are absent from the labour market for extended periods while they take care of young children. Women also make use of public sector services in high numbers, the very services being cut back during austerity. They rely on the welfare state for many reasons to a much larger extent than men. Welfare reforms like the benefit cap, bedroom tax and sanctions, closures of community centres and privatisation of Sure Starts and lone parent conditionality hit not just women in large numbers, but children and families too. This research is trying to illustrate how austerity is regressive and contributing to growing inequality, and how this group, like many all around the UK, are finding it a challenging time to live through.

References

  • Blyth, M. 2013. Austerity: the history of a dangerous idea. Oxford University Press, Oxford.
  • Hochschild, A. 1989. The Second Shift: working parents and the revolution at home. Viking Penguin, New York.
  • Konzelmann, S., 2014. The political economics of austerity. Cambridge Journal of Economics 38 (4) pp. 701–741.
  • Marmot, M., Allen, J., Goldblatt, P., Boyce, T., McNeish, D., Grady, M., and Geddes, I. 2010. Fair society healthy lives. The Marmot review executive summary. The Marmot Review. UCL Institute of health equity, London.
  • Mattheys, K. Bambra, C. Kasim, A. Akhter, B. 2015. Inequalities in mental health and well-being in a time of austerity: Baseline findings from the Stockton-on-Tees cohort study. SSM -Population Health 2 Pp. 350–359.
  • Oakley, A. 1979. Becoming a mother. Martin Roberston and Company Ltd., Oxford.
  • Oakley, A. 1993. Essays on women, medicine and health. Edinburgh University Press, Edinburgh.
  • Public Health England, 2015. Stockton-on-Tees Health Profile 2015.
  • Robson, S., and Robinson., J., 2012. Findings and recommendations from interim case study: the impact of austerity measures upon women in the North East of England. The Women’s Resource Centre, London.
  • Rubery, J. and Rafferty, A. 2014. Gender, recession and austerity in the UK. In: Karamessini, M. and Rubery, J. 2014. Women and Austerity, the economic crisis and the future of gender equality. Routledge, Oxon. pp. 123-144.
  • Schrecker, T., and Bambra, C., 2015. How politics makes us sick: neoliberal epidemics. Palgrave Macmillan, London.
  • Skeggs, B., 1997. Formations of class and gender, Theory, Culture & Society. Sage Publications, London.

 

Improving future asthma care

L0040548 Flyer and advert for "Potter's Asthma Cure"

5.4 million people in the UK have asthma, and every ten seconds, someone in the UK has a potentially life-threatening asthma attack. On average, three people a day die from an asthma attack in the UK – in 2014 (the most recent data available), 1216 people died from asthma. Many of these deaths are preventable, and continued use of asthma medication is an important factor in this (Asthma UK, 2017). But many people don’t stick to their asthma medication routines. Kathy Hetherington writes about her research into a new method of asthma treatment which is significantly reducing the risks associated with severe asthma.

My PhD investigates patient’s response to inhaled steroids using novel monitoring technology. I have spent the past year coordinating this project throughout the UK, within the Refractory Asthma Stratification Programme-UK, (RASP-UK). I work alongside Professor Liam Heaney and Professor Judy Bradley in Queen’s University, and Professor Richard Costello in the Royal College of Surgeons Ireland. As a young researcher in Northern Ireland I am excited in the knowledge that my PhD has the potential to improve future asthma care.

The Problem

Many asthmatics do not use their inhalers correctly. As a result, they don’t receive their prescribed dosage of inhaled steroid. Within Queen’s University Belfast and the Belfast City Hospital, we have developed and implemented a new method of observing and monitoring how patients use their inhalers. This revelation is significantly reducing the risks associated with severe asthma.

In RASP-UK severe asthma centres we record Fractional exhaled Nitric Oxide (FeNO), which is a measure of lung inflammation. An elevated FeNO is a predictor of worsening asthma symptoms or even an asthma attack. Those who continue to have an elevated FeNO are usually considered high-risk patients who need daily oral steroids alongside their inhalers. This elevated FeNO could be due to steroid resistance, or not continuing to use their inhaler (this is known as non-adherence). Determining inhaled steroid response in a difficult asthma population is a major problem in a clinical setting.

The Intervention

Within RASP-UK, we have established and further validated a clinical test using daily FeNO measurements (using a Niox Vero machine – Figure 2) alongside some additional inhaled steroid. The remote monitoring technology we use alongside this test is called an INCA™ (INhaled Compliance Aid) device. The INCA™ (Figure 1) was developed by Professor Richard Costello in conjunction with Vitalograph and is designed to work with the diskus inhaler. The INCA™ device records a time and date when the microphone inside it is activated, and records a sound file of the inhaler being used; these sound files can then be transferred to a computer. The sound files are then uploaded onto a server via a data compression utility programme where it is analysed by an automated and validated sound analysis algorithm. This combination allows us to create a remote assessment of inhaled steroid response and thus identify non-adherence to inhalers. We then communicate this information to the patients to try and improve their adherence to their inhaled treatment.

With further development, we created a web-based interface (Figure 3) to deploy FeNO suppression testing across the UK though our established RASP-UK Severe Asthma Centres. Here, we examined the utility of FeNO suppression testing to predict inhaled steroid responsiveness after a further 30 days on a normal inhaler. This period of prolonged monitoring provides further feedback on patient inhaler use and technique, using the unique presentation method below, enabling us to identify facilitators and barriers which may be involved in optimising inhaler adherence. We are constantly increasing the precision and user-friendliness of this hardware and software so that the data is easily interpreted and demonstrated to the patient.

asthma3

Figure 3 Data from the Vitalograph server following upload of one week FeNO suppression data and INCA™. The Vitalograph server shows activation and usage of both FeNO machine and INCA™ device (A) and depicts the FeNO data as precentage change from baseline as originally described (y1-aixs figure A).  The INCA™ device time and date stamps the number of inhaler uses (y2-axis – Figure A) and this is shown alongside technique analysis (B). Possible technique errors which can be identified and reported are shown in Graphic 3.

asthma4

The Future

Though we are only a year into our project, 250 patients in severe asthma centres throughout the UK have carried out FeNO suppression testing. Many have gone on to improve their inhaler usage and asthma control and decrease the inflammation in their lungs. We have presented our UK multi-centre data at conferences all over the world and interest in our project is increasing. In the past 6 months I have had the privilege of being a key note speaker at Severe Asthma Masterclasses and Specialist Asthma Meetings. This summer I have been invited as a symposium speaker at the European Academy of Allergy & Clinical Immunology in Helsinki, Finland which will undoubtedly be the highlight of my career to date!

My PhD has given me the opportunity to be able to work with a wide range of fantastic professors, clinicians, patients and co-ordinators. This PhD has convinced me that we can use this unique test and methods of presentation to improve asthma care throughout the world. I can’t express how much this thought excites and drives me; it is with great humility and privilege that I will continue to contribute to this extraordinary field.

Support Givers: Exploring the role parents and peers play for young people with depression

By: Sadhbh Byrne

“The number one health issue for [Irish] young people is their mental health”

(Dooley & Fitzgerald, 2012, p. vii).

Approximately 20% of young people globally, and in Ireland, experience mental health difficulties in any given year. Of all mental illnesses that affect young people, depression is among the most concerning, due to its prevalence in youth and its link with suicide.

In Ireland in 2015, 21% of deaths of people aged 15 to 44 years were attributed to suicide and intentional self-harm.

Suicide is the third leading cause of mortality in young people worldwide, and Ireland has the fourth highest rate of youth suicide in Europe.

Worryingly, however, research over the past twenty years has consistently shown that young people are unlikely to seek help for mental health difficulties, or to engage with professional mental health services. Furthermore, it has been demonstrated that adolescents who experience depression or suicidal ideation are particularly unlikely to reach out for support. Therefore, it appears that the young people perhaps in most imminent need of help are those least likely to seek assistance.

Why is this so?

imga.pngAccess to mental health services in the Irish public healthcare system is typically initiated through a visit to a general practitioner (GP). However, the My World Survey (the largest study of youth mental health in Ireland to date, conducted by UCD and Jigsaw) found that less than one fifth of adolescents with mental health difficulties access a GP service. Given that young people name concerns about confidentiality as a prominent barrier to service use, the fact that caregivers of Irish adolescents under 16 years must be informed of any mental health treatment from a GP is problematic. The cost of a GP visit may also place a further burden on adolescents. Some young people can access support from a school counsellor, but specialised psychological counsellors are not present in many secondary schools. Although the Irish public healthcare system is supported by some organisations that offer free services for young people (e.g., Jigsaw), these are typically situated in urban centres, limiting access for young people living in rural areas.

‘Informal’ support

However, it has been found that if adolescents do seek help, they first turn to family and friends. Furthermore, it has been suggested that members of a young person’s social network may also be able to reach out and provide help before it is sought by the young person themselves. Psychological or mental health first aid is the help given to someone developing a mental health problem or in a mental health crisis. The first aid is given until appropriate professional treatment is received or until the crisis resolves. This concept essentially formalises the informal support provided by members of an individual’s social network. Owens et al. (2011, p. 1-2) go so far as to state

“Relatives, friends, and colleagues may be the only people to know that a person is distressed, and the burden of care lies entirely with them, until such time as the person decides, or is persuaded, to consult a doctor”.

Parents appear to be important providers of this ‘informal’ support for young people in distress. Parents possess inherent motivation to provide help to their child if they are suffering from mental health difficulties, and young people place importance on their parents’ opinions when making important decisions. However, while there has been some research conducted on the role that parents play in facilitating young children’s mental health service use, there is currently very little information available on the support that parents may offer to their adolescent children. The limited research available suggests that parents understanding of mental health services may be somewhat poor. For example, although 65% of parents in one Australian study recommended getting ‘professional help’, only 3% encouraged seeking the help of a psychologist or psychiatrist. Other studies have found that the majority of parents of children with mental health problems do not identify that their child has a problem. Parents in a UK study reported worries about not being ‘good enough’ parents if they ‘resorted’ to seeking help for their child. These research findings are troubling given that, for young children at least, mental health service use is not predicted by the severity of the child’s problems, but is instead mediated by parental perception of need for services.

Peers as providers of support

Given the pervasive nature of youth depression, many young people will have contact with a peer with depression during their adolescence, with over half of adolescents in one recent study reporting that they had contact with an individual experiencing a mental health problem in the past three months. As adolescents spend increasingly more time with peers than with family as they grow older, peers may also be in a unique position to observe changes in an adolescent’s behaviour before these changes may be noticeable to adults. Again, however, there is a scarcity of research on the role that peers may play as providers of mental health support in adolescence.

In a previous study that I conducted, published in 2015, I presented participants (aged 15 to 19 years) with descriptions of two young people, Tony and Emily, who were experiencing life difficulties. The behaviours and symptoms described for both Tony and Emily met Diagnostic and Statistical Manual of Mental Disorders (developed by the American Psychiatric Association) criteria for depression, and in Emily’s story, the character made reference to suicidal ideation.

The majority of participants in this study did not identify depression in either character’s description, and only 9% identified Emily as suicidal. The participants did, however, show concern for both characters;

99% of female participants and 89% of male participants answered “Yes” when asked “Do you think Tony needs the help of another person?” In response to Emily’s scenario, 90.6% of female participants and 83.5% of male participants answered “Yes” to the same question.10-corpse.jpg

When asked to explain why they would help the characters, participants mentioned reasons such as: “Because if he needs help then his friends should be the people to get him the help that he can’t.” (Female, age 17). The types of help mentioned included comforting and reassuring their peer: “I would reassure her that whatever is going on will be alright in the end.” (Female participant, age 16). However, some participants felt ill-equipped to provide this type of support to a friend: “I’d honestly have no idea how to help Tony.” (Male, age 17).

My PhD research

In sum, it is clear that parents and peers play an important role in supporting young people with depression. However, knowledge of the support that parents and peers actually provide is comparatively scant. In my PhD research, which is ongoing, I am further exploring this. I am particularly interested in investigating the association between certain factors, such as knowledge of mental illness, and different types of support offered.

I hope that my research will help to understand the support that young people may receive – especially those young people who do not engage with mental health services. Furthermore, I hope that this new understanding will in turn inform policy and practice that will improve outcomes for young people in distress.

Note: If you are a parent/guardian of a young person aged 12 to 18 years, living in the Republic of Ireland, you can contribute to this study by completing a questionnaire at: bit.ly/TCDcaregiverstudy

Mental Health Ireland has a list of those who support those with mental health issues. See the list here if you are affected by any of the issues discussed in this piece. 

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.

 

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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.

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