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Archive for the 'E-Health Unit' Category

Primary care in the COVID-19 era: do we still practice preventive care?

Megan Armstrong14 September 2021

Alaa Alghamdi is a GP who is undertaking a PhD at UCL

This blog is by Alaa Alghamdi and tackles the practice of preventive care during the COVID-19.

To begin this blog, I have shared a medical case study that clearly addresses the topic at hand:

A 55-year-old male Saudi professor, married with five children, unknown to have any medical illness and not on medications. He presented to the emergency department (ED) complaining of unintentional weight loss of 10 kg in the last six months associated with fatigue. Initially, he attributed his symptoms to the psychological impact of the pandemic. Because of the fear of risk exposure to COVID-19 alongside lockdown restrictions of visiting health facilities for non-emergency, he avoided seeking medical help until he remarked jaundice. In the ED, a CT scan with IV contrast was performed. It showed circumferential wall thickening involving the short segment of the ascending colon with pericolonic enlarged lymph nodes and numerous hepatic lesions indicating metastasis. He was diagnosed with stage 4 colon cancer and referred to a tertiary specialist hospital. Unfortunately, palliative care was the only option in his late presentation, and he passed within two months of his diagnosis.

This case might be one of many other cases that have been affected by disrupted healthcare during the pandemic that prioritised COVID-19 cases. Cancer could be one of the preventable deaths through appropriate screening and early detection (1). Screening is effective for both early detection and prevention in 80% of colorectal cancers (2) and has the potential to reduce colorectal cancer deaths by 60% (3).

Preventive screening is a vital part of primary healthcare practice (PHC). As with many other countries, Saudi Arabia (SA) has started preventive care services early with various programmes delivered through PHC (4). However, like many other countries, the Saudi Ministry of Health (MOH) has diverted resources to healthcare facilities to be able to manage the high numbers of COVID-19 patients. Although SA’s response to the pandemic places it at the highest ranks on international indexes (5) and the second at NIKKEI COVID-19 recovery index (6), the WHO showed that COVID-19 significantly impacts health services for non-communicable diseases (NCDs) globally, including SA (7).

My PhD project aims to explore the patient experience with PHC to provide the appropriate engagement and utilisation of PHC in SA. One of the key issues I have been exploring is the influence of COVID-19 on patient engagement with PHC. An important emerging point is the preventive screening during this pandemic for non-COVID conditions. There are growing concerns that have been arisen by using the online health services, which might have an indirect impact on health providers’ practices towards preventive care. In SA, many online health services have emerged throughout the pandemic, including telemedicine, online appointments and medication delivery. Although most participants expressed their appreciation of the unusual and massive use of online health services, the GPs’ practices towards regular screening are questionable. In my research position as a clinician interviewing a diabetic patient, I asked about the last time that haemoglobin A1c has been tested, the response was startling:

“I had it last year, but the coronavirus pandemic delayed tests appointments. They only care about dispensing the medications.” (P7)

Screening for diabetes complications such as retinopathy, diabetic nephropathy and diabetic foot, which are supposed to be done annually, has been postponed for most of the participants.

The children’s regular vaccination programme also has been affected. Some participants who attended a PHC regularly complained about the delay in completing their children’s vaccines due to difficulties in obtaining a vaccine appointment.

“They told me that the vaccinations were over and I have to wait for a new appointment. This is the reason why my children did not get their vaccinations until now, even though they are to join the school this year. My daughter still has to get one vaccination and my son still has to get two vaccinations.” (P15)

COVID-19 impact on care for patients with non-COVID conditions and the concern around preventive screening is not restricted to Saudi healthcare. A UK survey found that access to health services for people with long-term health conditions was 20% lower during the COVID-19 peak period. Some of the most significant falls in the use of health services are for mental health, heart disease, diabetes and cancer (8). According to the latest records by WHO (April 2021), 41 million people each year die from NCDs, including diabetes and chronic cardiovascular and lung diseases, which is equivalent to 71% of all deaths globally. In addition, each year, more than 15 million people die from NCDs between the ages of 30 and 69 years (9). Primary prevention is a vital component of the response to NCDs (1)(9), and reduces over one-third of all cancer cases (10). Moreover, people living with NCDs are at a higher risk of severe COVID-19-related illness and death (7)(11).

This reveals how preventive care is required at an alarming pace and emphasises the need for the urgent implementation of efficient prevention strategies during COVID-19. GPs’ efforts must be focused on adhering to evidence-based screening guidelines. Health system policymakers also need to recognise that prioritising COVID cases for pandemic control have other health consequences and demand responses to all health needs. This does not minimise the important measures taken to reduce the risk of COVID-19, but it is an opportunity to build a resilient recovery and emerge stronger from the pandemic.


  1. Burke CA. Colorectal Neoplasia [Internet]. 2017. Available from: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/gastroenterology/colorectal-neoplasia/#bib1
  2. Cunningham D, Atkin W, Lenz H-J, Lynch HT, Minsky B, Nordlinger B, et al. Colorectal cancer. 2010;375:18.
  3. He J, Efron JE. Screening for Colorectal Cancer. Advances in Surgery. 2011 Sep;45(1):31–44.
  4. Sebai ZA, Milaat WA, Al-Zulaibani AA. Health care services in saudi arabia: past, present and future. Journal of family & community medicine, 8(3), 19–23. 2001;
  5. Saudi Arabia’s response to the COVID-19 pandemic places it at the highest ranks on international indexes [Internet]. ARABNEWS. 2021. Available from: https://www.arabnews.com/node/1880171/saudi-arabia
  6. GRACE L. Nikkei COVID-19 Recovery Index. 2021.
  7. Brunier A. COVID-19 significantly impacts health services for noncommunicable diseases [Internet]. Available from: https://www.who.int/news/item/01-06-2020-covid-19-significantly-impacts-health-services-for-noncommunicable-diseases
  8. Charlesworth. Shock to the system: COVID-19’s long-term impact on the NHS [Internet]. 2020. Available from: https://www.health.org.uk/news-and-comment/blogs/shock-to-the-system-covid-19s-long-term-impact-on-the-nhs
  9. WHO. Noncommunicable diseases [Internet]. 2021. Available from: https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases
  10. Vineis P, Wild CP. Global cancer patterns: causes and prevention. The Lancet. 2014 Feb;383(9916):549–57.
  11. Bashir S, Moneeba S, Alghamdi A, Alghamdi F, Niaz A, Anan H, et al. Comorbidities in Patients with COVID-19 and Their Impact on the Severity of the Disease. Journal of Health and Allied Sciences NU. 2021 Jan;11(01):01–7.

Embedding palliative care into homeless hostels in the UK

Megan Armstrong6 July 2021

 “I’ve seen so many people die…so much of it over the last 19 years…And it’s [the project] invaluable. It should have been done years ago” – Hostel Staff member

In this month’s post, Dr Caroline Shulman and Dr Megan Armstrong discuss their work on embedding palliative specialists into homeless hostels across the UK.

Dr Megan Armstrong is a Senior Research Fellow now managing the PD-Care study and is PI of ‘optimising self-management of long-term multi-morbidity in people experiencing socioeconomic deprivation’.

Image of Caroline Shulman

Dr Caroline Shulman is a GP in Homeless and Inclusion Health and a Honorary Senior Lecturer at UCL. Caroline is continuing to roll this project out, including providing training for hospices on homelessness issues.











People experiencing homelessness have a high rate of multi-morbidity, frailty and age-related conditions at a young age and are at high risk of dying young [1,2]. Previous work found people living in homeless hostels often had severe physical and mental health problems, often complicated by substance misuse, and despite the complexity of need they almost never have access to palliative care support [3]. This lack of palliative care support is due to variety of reasons including hospices being unable to support those with addictions and mental health issues, uncertainty about when someone might be palliative, and hostel staff feeling uncomfortable about discussing palliative care [3]. For many people experiencing homelessness, the hostel can be their preferred place of care as they often consider this to be the closest place they have to a home [4]. The lack of palliative care support and appropriate places of care leads to hostel staff supporting very unwell people with complex needs.

Our project aimed to improve access to high quality care and support for people experiencing homelessness who have advanced ill health and to reduce the burden on frontline staff, by embedding training, support, and a multidisciplinary team approach into hostels [5]. Palliative care nurses and social workers attended an intensive two-day training course into homeless issues. Free online training resources were shared (www.homelesspalliativecare.com); this includes tools that can support hostel staff to work with people with palliative care needs. Following training, we held a stakeholder event for homelessness, health, social care and addictions commissioners and providers. This resulted in useful connections being made between different organisations. Following this event, the palliative care staff spent 1-2 days per month in the hostels.

Palliative care staff trained and supported hostel staff to identify red flags, consider which residents they were concerned about who may benefit from a multidisciplinary approach and supported them to involve other members of the multidisciplinary team in the care of their residents. Hostel staff felt much more confident and empowered to approach other agencies as a result of the project.

“I think everyone is just a little bit braver now, to step forward and [to outside agencies] be like, actually, this is how it is supposed to be. You’re not supposed to be telling us that.” – Hostel staff member

The palliative care teams also helped staff focus on a holistic person-centred approach, exploring what ‘living well’ means to someone. As a result of the support provided, hostel staff were happy to support someone who had a new advanced cancer diagnosis, to have a planned death within the hostel. This was the resident’s choice and prior to the project, this would not have been considered.

“Initially when we think that someone is going to die, we would have said “no,no,no, we  need to move them on quickly, we don’t want them dying within the hostel” ..but then we started to change our way of thinking because of this…we did start saying, well yes this is his home” – Hostel staff member

There is a need to refocus how we support people experiencing homelessness with advanced ill health or complex health needs. Not everyone will recover so to work in a more person-centred way we need to explore what insights people have around their illness and explore what living well means to them. If recovery is not an option, the least we can do is support someone to have a dignified and respectful death.


  1. Rogans-Watson R, Shulman C, Lewer D, Armstrong M, & Hudson B. (2020). Premature frailty, geriatric conditions and multimorbidity among people experiencing homelessness: a cross-sectional observational study in a London hostel. Housing, Care and Support Vol 23 NO. 3/4 2020, pp. 77-91
  2. Aldridge RW, Story A, Hwang SW, et al. Morbidity and mortality in homeless individuals, prisoners, sex workers, and individuals with substance use disorders in high-income countries: a systematic review and meta-analysis. Lancet 2018;391:241–50.
  3. Shulman, C., Hudson, B. F., Low, J., Hewett, N., Daley, J., Kennedy, P., Brophy, N. & Stone, P. (2018). End-of-life care for homeless people: a qualitative analysis exploring the challenges to access and provision of palliative care. Palliative medicine32(1), 36-45.
  4. Hudson, B. F., Flemming, K., Shulman, C., & Candy, B. (2016). Challenges to access and provision of palliative care for people who are homeless: a systematic review of qualitative research. BMC palliative care15(1), 1-18.
  5. Armstrong, M., Shulman, C., Hudson, B., Brophy, N., Daley, J., Hewett, N., & Stone, P. (2021). The benefits and challenges of embedding specialist palliative care teams within homeless hostels to enhance support and learning: Perspectives from palliative care teams and hostel staff. Palliative Medicine, 02692163211006318.

Signposting patients to sexual health online – don’t forget the health (or the sex)

Nathan Davies22 May 2020

In this post Julia Bailey discusses the impact of Covid-19 on sexual health services and discusses sexual health online. 

The Covid-19 pandemic has prompted an unprecedented shift to remote health services as a response to social distancing for patient and practitioner safety. Sexual health clinic capacity has been cut as staff have been deployed to other parts of the health service, and patients are now asked to contact health services by phone or video-link, with clinic visits reserved for a small proportion of people who need to be seen (FSRH guidance). People can also access online sexual health services for STI testing (+/- contraception), in areas where this service is provided.

The shift to remote consultations is likely to make it more difficult to offer holistic healthcare and health promotion. For example, patients welcome opportunities to discuss sexual wellbeing beyond physical health (e.g. sexuality, sexual difficulties, sexual pleasure), but picking up on this will be more challenging with less opportunity to notice non-verbal cues and to establish trust (e.g. whilst examining).

Resources via the Internet and mobile phone can offer private, convenient access to information, which may be particularly welcome for topics which can be difficult to discuss (e.g. sex, sexuality, sexual difficulties). Online sexual health services can offer efficient STI testing and treatment, but do not usually offer evidence-based sexual health promotion. Interactive (i.e. tailored) digital interventions are effective for learning and sexual behaviour change, and could be incorporated into online sexual health pathways.

There is no nationally commissioned digital sexual health programme, and digital innovation varies widely across the UK. There are thousands of health apps and websites, but only a tiny minority have been rigorously evaluated and it is difficult to know which to recommend – the NHS apps library curates trustworthy resources.

Digital sexual health resources for patients – some suggestions:

Before (or instead of) appointments:

After a diagnosis/ongoing support:

Tips for writing patient materials

  • Don’t reinvent the wheel! Check what’s already available
  • Involve target users to make sure material meet their needs, priorities and preferences
  • Draw on principles of evidence-based sexual health promotion
  • Address barriers to access, e.g. audio and video formats; material in first languages
  • Address groups whose needs are often overlooked (e.g. women who have sex with women, trans, non-binary, intersex, and disabled people).


The post-pandemic ‘new normal’ will include digital health. There are some excellent online sexual health information resources available, and there is currently an unprecedented opportunity to offer evidence-based, tailored sexual health promotion to complement online and clinician-delivered sexual health services.


(This post was originally posted on the BMJ Sexual and Reproductive Health website who have provided permission to repost)

The unexpected consequences of researching unexpected consequences: The DECODE Study

rmjlmcd15 March 2019

In this post, Lorraine McDonagh, Sarah Blake, Fiona Stevenson, and Fiona Hamilton (on behalf of the DECODE study team) reflect on the unexpected consequences of researching unexpected consequences.

The DECODE (UnexpecteD Consequences Of Digital hEalth Tools) Study aims to explore the unexpected consequences (both positive and negative) of digital health technologies for patients, GPs and general practice staff. We are particularly interested in smartphone apps, online consultations with GPs, and patients having online access to their medical records. The project is funded by the NIHR School for Primary Care Research.

Late last year, we ran a workshop with members of the public/patients, researchers in the field, technology developers, and GPs to help identify areas we should be thinking about when considering the unexpected consequences of using digital tools in primary care. The findings of this workshop are discussed elsewhere, but here, we reflect on the unexpected consequences of researching unexpected consequences.



Setting-up the workshop proved more challenging than expected. We wanted to have equal numbers of people in each of our key stakeholder groups – patients, researchers, technology developers, GPs and practice managers. Accessing researchers and GPs interested in this topic was reasonably straightforward – possibly because most members of the DECODE team fit within one of these groups! However, we didn’t manage to recruit any practice managers, despite repeated emails and phone calls, keeping in mind that attendance was voluntary. We put a lot of effort into seeking out technology developers, we even signed-up for a Premium LinkedIn account and contacted developers directly but no one responded. Eventually, after exhausting all our contacts and trawling the internet, four technology developers agreed to come.



We planned to organise attendees by profession into mini-discussion groups, but on the morning of the workshop, three technology developers could not make it and had to drop out. We learned the one technology developer who turned up also had research experience so we decided to pair him with the researcher group. Unexpectedly, we soon learned that many people in attendance had multiple roles and could bridge across several of our pre-defined groups – for example, one patient was an ex-GP, one PhD student researcher was also a GP, and the technology developer was also a former GP.

Importantly, not all unexpected consequences are negative; we gained more insights than expected.  For example, one GP gave an impromptu presentation of how well his practice has been using digital tools. At points, different competing priorities among the diverse stakeholder groups were evident, with some interested in the practical unexpected consequences, such as data security (the patient and GP group), and others keener on theoretical standpoints (the researcher group). To illustrate, one task was to discuss what potential unexpected consequences could occur from use of apps, online consultations, and patient access to electronic records.  The researcher group felt that this required a literature review and directed their discussions towards devising a logic model for understanding unexpected consequences. The other groups, however, as anticipated when devising the task, drew on, presented and discussed their own experiences of digital health technologies.

Some members of the patient group were concerned about changes resulting from the increasing use of digital health technologies. Unexpectedly, the greatest ambition of these patients was to use digital tools to feel a sense of empowerment and autonomy in consultations and healthcare provision. They spoke negatively about paternalistic attitudes from clinicians and wanted to move towards more equal partnerships and involvement in decision making regarding their health. They felt this could also increase their safety and well-being, as technology would enhance their ability to self-monitor health. It is important to remember that these patients, who gave their time to share their views, are not necessarily illustrative of how every patient would feel. Some patient/public views remain absent from research, despite efforts to bridge these gaps. There are many reasons patient/public views can go unheard; people may be inaccessible due to vulnerability (e.g., those who are homeless, those with learning difficulties, those with languages other than English), or simply by being too busy to be heard (e.g., those with substantial caring responsibilities, those in full-time employment). Building an inclusive picture of patient/public voices remains challenging.



The key lesson we’ve learned from this experience was the power of combining individuals across key stakeholder groups. However, we are left wondering what voices have we missed? How do we know the unknowns? To shed further light on these issues, our colleagues at University of Oxford are conducting a conceptual literature review and colleagues at Universities of Bristol and Manchester are conducting interviews with patients, primary care staff and technology developers. Following on from which, we (the UCL team) will be carrying out another workshop with stakeholders.

The team is also keen to get as many views as possible on potential unexpected consequences of digital technology. If you have any insights related to these three types of technology or would like to comment on the unexpected consequences identified so far, please contact Andrew Turner or take part in Twitter discussions using the hashtag #DECODEstudy.


Are we dancing with the devil? Thoughts on academics working with private companies in the digital health field

Nathan Davies20 March 2018

In this post Julia Bailey from the eHealth Unit discusses collaborating with the private sector with particular reference to digital health. 

Digital health is booming. In this article I stereotype ‘the commercial sector’ and ‘the public sector’ to illustrate important inherent tensions between the approaches, assumptions, interests and motivations of different players in the digital health field.

Digital innovations can empower patients, improve health, and potentially save health service resources. There are innovation success stories such as Nervecentre clinical records software which is saving lives and NHS resources by alerting clinicians to patient sepsis. Another success story is the Sleepio cognitive behavioural therapy app for insomnia which has been commissioned in many NHS localities. Digital health is fertile ground for the commercial sector, and there is excited talk about how to ‘monetise’ healthcare, and ‘disrupt’ existing NHS systems.

Tech companies are stereotypically innovative and dynamic. Small companies can be flexible and responsive, and the short timescales from idea to product can be very impressive. However, digital health innovation can sometimes be characterised by technology in search of a health problem rather than health problems which need innovative solutions, and the vast majority of health apps and websites have not been evaluated to see whether they have health benefits or whether they cause harm.

Academics and clinicians can offer clinically relevant, evidence-based design, and rigorous evaluation. Ethical review, data monitoring and regulatory protocols allow for patient wellbeing and safety to be carefully considered. However, while academic research can be thorough and insightful, the timescales of research and development within the NHS are stifling innovation – it can take 5 years or more from applying for a grant to publishing the results, at costs running to hundreds of thousands of pounds. Public sector funding does not support continuous iteration, or a willingness to spend on ideas which might not work. Innovations are implemented in a piecemeal way, and dropping digital innovations into an inefficient organisation such as the NHS without a whole-system review is unlikely to be successful.

NHS staff may feel wary of private sector motivation and conduct. For example, the Reed Elsevier group (who publish the Lancet) was involved in organising arms trade fairs until public pressure forced a stop. Pharmaceutical companies invest hugely in advertising and sponsorship which influences doctors’ prescribing habits, and pharmaceutical company research tends to produce favourable results.  Patient groups supported by pharma may increase pressure to endorse particular treatments. Public trust has been eroded regarding the handling of sensitive data: for example Care.data was designed to take data from GP records and to combine it with hospital records to find better ways to prevent, monitor or manage illness, but the programme was dropped after public outrage over the sharing of sensitive medical information with commercial entities without explicit consent. In 2015, 1.6 million NHS records were unlawfully shared with the Google’s Deepmind Health machine learning research group. Some mechanisms for app monetisation may engender distrust, for example advertising or selling data.

There is a risk that digital innovation is used as a pretext to reduce face-to-face health services. For example, sexual health services in England have been heavily cut with the expectation that 30% of London’s patients will go online to request tests instead of attending clinics. However, the new online system has not been evaluated in terms of its impact on health, workload, inequalities or cost-effectiveness, and clinics have been reduced or closed before the online service was ready to roll out.

The commercial sector and the public sector, at their best and worst ….*


*Stereotypes for illustration. There are many exceptions to these characterisations…

There is an important tension between ‘profit’ and ‘better health’ as the criteria for success of an innovation. It is tempting to judge the success of a product by how popular (or profitable) it is rather than its impact on health. Both popularity and health benefit are necessary, since an intervention needs to be attractive and engaging to have optimum impact on health. Digital health interventions need technical and clinical updating, which means that an income stream is necessary, but it is essential to enshrine health benefit to ensure that innovations are ethical and beneficial.

Collaboration between sectors can play to different strengths to develop high quality, sustainable innovations within reasonable timescales, but all parties need to be aware of any conflicting assumptions, priorities and interests. We need productive cross-sector collaboration (including patients/users) to develop effective, attractive and engaging interventions underpinned by the best available evidence.

  • There are important inherent tensions when academics, clinicians and health service commissioners collaborate with the private sector
  • Collaboration between sectors can make the most of different strengths and is likely to lead to better interventions
  • Health benefit should be enshrined in all digital health innovations
  • Rigorous evaluation is needed to make sure that money is well spent, and that digital innovation leads to better health (or at least no harm)

Acknowledgements: Grateful thanks to colleagues who have commented on drafts of this blog.

The 2017 UCL TechSharing Seminar Series

Nathan Davies10 November 2017

In this post Nikki Newhouse discusses a very successful 2017 for the UCL TechSharing Seminar Series. Not sure what they are or want to become involved?? Have a read!

The TechSharing Seminar Series is organised by a group of early career researchers from UCL Interaction Centre, the Research Department of Primary Care and Population Health (eHealth Unit), the Department of Clinical, Educational and Health Psychology and the Department of Behavioural Science and Health. The aim of the seminar series is to foster knowledge exchange and future collaboration between researchers, practitioners, policy-makers and industry professionals working within or at the boundaries of health technologies and digital behaviour change interventions.

The series has been active since 2014 and has brought together a wide audience around key topics in digital health research and practice including creativity, communication, methodology and policy impact. Led by early career researchers, the seminar series places UCL students and the UCL community at its heart, and sees an audience drawn from across multiple UCL departments and academic disciplines. The series’ healthy reputation means that the audience is enriched by contributors and audience members from outside UCL: students from other academic institutions, technology developers, clinicians and policy-makers.

The most recent iteration of the series was funded by a UCL Policy Challenge Award. Three interlinked seminars explored the practice and process of embedding technology within the NHS.

Seminar 1 – Bridging the interdisciplinary gap

The first seminar in May 2017 interrogated multidisciplinary teamwork within the context of digital health technologies. The day started with a thought provoking talk by Carmelo Velardo, Senior researcher in Digital Health at the Institute of Biomedical Engineering and Departmental Lecturer at the Department of Engineering Science, University of Oxford. Carmelo’s research focuses on the use of technology solutions to support patients suffering from chronic conditions.

T1    T2

Carmelo was followed by coffee fuelled small group discussions during which attendees critically examined the meaning of key terms, such as engagement, co-design, evidence, implementation and impact/effectiveness. The lively audience was comprised of computer scientists, health professionals, human-computer interaction researchers, psychologists and industry professionals including those from software development, media and banking. This was then followed by a panel discussion with participants drawn from academia, industry and health policy and facilitated by Dr Henry Potts, deputy director of CHIME, UCL’s Centre for Health Informatics & Multiprofessional Education.

Seminar 2 – Co-designing for health

The second seminar in June 2017 focused on the principles of co-design in the context of digital health and provided a practical introduction to the topic. The session was led by Dr Victoria Betton, Founder & Director of mHabitat. Co-design activities included understanding and creating personas, user stories and translating these into design solutions.

T3  T4

Dr Roisin McNaney, Human Computer Interaction Lecturer at Lancaster University then presented a case study on co-designing and enacting tools to support young people’s engagement with people with dementia. We closed the session with a panel discussion facilitated by Dr Julia Bailey, Clinical Senior Lecturer in Primary Care with UCL’s eHealth Unit and a Speciality Doctor in Community Sexual Health.

Seminar 3 – Is it worth it? Getting your digital product into NHS (or choosing not to)

The third and final seminar of the 2017 series saw academics, policy-makers and developers come together in October to debate pressing issues facing those attempting to embed health technology within UK’s healthcare system. The seminar also served as an introduction to the key rules, regulations and realities of getting health tech adopted by the NHS.

T5  T6

The audience enjoyed presentations from Yinka Makinde (DigitalHealth.London), Professor Elizabeth Murray (UCL eHealth Unit) and Dr. Anne Bruinvels (Px HealthCare) before engaging with the lively panel discussion, moderated by Professor Ann Blandford (UCL Interaction Centre & IDH) which included our speakers as well as Indra Joshi (NHS England) and Susannah Robinson (Public Health England).

Future plans

The series website hosts a collection of blog posts that have been widely disseminated using social media (https://ucltechsharingseminars.wordpress.com/). Planning for the 2018 series is under way and the organising committee is keen to hear from anyone who would like to be involved, either as a speaker or as part of the planning team. Please get in touch with Nikki Newhouse for further information (nikki.newhouse.14@ucl.ac.uk)

ECL TechSharing Team

Nikki Newhouse

PhD student – Department of Computer Science (UCL Interaction Centre) and the Department of Population Health and Population Health Research (eHealth Unit)

Olga Perski

PhD student – Department of Clinical, Educational and Health Psychology

Anna Roberts

PhD student – Department of Behavioural Science and Health

Paulina Bondaronek

PhD student – Department of Population Health and Population Health Research (eHealth Unit)

Dr Aneesha Singh

Postdoctoral researcher – Department of Computer Science (UCL Interaction Centre)

What’s new at PCPH about reproductive health: the women-health professional communication and risk awareness of combined hormonal contraceptives project

Nathan Davies28 February 2017

IMG_2344In this post Paula Gomes Alves who has recently joined PCPH as a research associate working with Fiona Stevenson, discusses their European Medicines Agency funded project which is looking into how women and health professionals communicate about the risks of oral contraceptives.

In this international project, we will have the opportunity to gain a greater insight into what women know about the health risks of combined hormonal contraceptives and which information sources  they use to learn about these risks. We will also study this topic from the perspective of health professionals, so that we can learn about how these two groups communicate regarding the use of oral contraceptives and their risks to health.

Our project will follow a mixed-methods approach, including semi-structured interviews and a web-survey. The interviews and the survey will be conducted with women and health professionals, to gain both perspectives. We will also recruit in several European countries simultaneously, which will allow us to explore this topic in a multicultural context.

What attracted me to this project?

As a woman in her mid-thirties, I have already been involved in many informal discussions with friends and family members about contraceptives, in particular, birth control pills. Some say that “all women put on a lot of weight when they take it”, whilst others advise that “no women should ever read the pill information leaflet, or they might withdraw from taking it for being so dangerous”.

Although these are examples drawn from my personal experience, I wonder whether they reflect the beliefs, attitudes and perceptions that most women have about oral contraceptives?? From the perspective of a researcher, it is also interesting to investigate where and how do woman form their knowledge about the birth control pill and to what extent that knowledge influences their contraceptive choices. For instance, a few years ago, and in another different population, I was part of a research project in which we found that the false beliefs that people hold about opioid substitution treatment (for instance, methadone) are likely to affect the outcome of that treatment. This means that medications may not work as expected if patients are misinformed about how they work and the benefits/risk that they involve.

Where are we now and what will be our next steps?

Our project is evolving at a fast pace. After being launched in October 2016, and following the approval of its final protocol by the European Medicines Agency, our empirical work began in January 2017 with my research appointment. We submitted our application for the UCL Research Ethics Committee in late January and we are now waiting for its outcome. We were fortunate to have informal discussions with Ana Gubijev and Julia Bailey throughout this process – so yes, I can confirm that in case of doubt, discussing your thoughts and learning from your colleagues’ previous experiences is definitely the way to go if you want to be successful.

In the meantime, we are starting a narrative review to explore the existing literature about our topic. Contacts with potential participating research sites, for recruitment purposes, will also be made shortly.

How does our project contribute to (a better) reproductive health?

I recently read on the United Nations Population Fund’s website  that “to maintain one’s sexual and reproductive health, people need access to accurate information and the safe, effective, affordable and acceptable contraception method of their choice”. However, as a researcher and, most importantly, as a woman, I do not know to what extent this health recommendation is translated into practice. But hopefully, our project will be a step forward in this direction.

At the end of our project, we expect to have a better understanding of health communication, by revealing the perspectives and voices of health professionals and women about the use of combined hormonal contraceptives. Most importantly, we will listen to women/health professional’s personal and professional experiences, which hopefully will provide a more realistic account on what people know about pills and which type of information they are provided with before making any decision about their reproductive health.

In a nutshell, by sharing my experience so far and what we are going to do in this project, we trust that other people may become as excited and curious about this topic as we. And don’t worry – we will keep you posted on further developments!

The Contraception Choices Project

Nathan Davies23 February 2017

In this post Anasztazia Gubijev a research associate working on the Contraception Choices project with Dr Julia Bailey and Professor Judith Stephenson talks about her experiences on the contraception choices project which is split between PCPH and The Institute for Women’s Health.

The Contraception Choices project involves designing a digital intervention (a website) to help women choose a method of contraception that suits their needs. Many women are not aware of the wide range of contraceptive methods that are available to them and there are various misconceptions that deter women from using contraception. We are aiming to design a website that addresses some of the common misconceptions (such as thinking that hormones are harmful, that contraception causes infertility or that your body needs a break from contraception), and suggests contraceptive methods that may suit a woman’s preferences and lifestyle.

There are two phases in our project. Phase 1 involves doing a qualitative evaluation of women’s contraceptive knowledge and common misconceptions. Phase 2 is a pilot randomised controlled trial to evaluate effectiveness of our website. We are currently finishing up phase 1 and hoping to start phase 2 soon.

After a year and a half of working on this project there are a lot of things that I have learned, often by trial and error. We have made good progress on this project, but there have also been a few setbacks on the way. As an early careers researcher I wish I had known a few things before I started, so I will share these with you:

NHS ethics and R&D applications always take longer than you think they will.

Our project is a multi-site project because we recruit women from 5 different sites, so it made getting approval for recruitment quite tricky. It took us nearly 6 months to be given full approval to go ahead with recruitment at one of our project sites, which we definitely didn’t expect.

Make sure the sites you recruit from have the right population sample.

Our study population sample is women from the age of 15-30. One of our recruitment sites for phase 1 was the maternity unit at UCLH. After going through a lengthy and tedious process of getting NHS ethics and R&D approval we discovered that most women at UCLH were having babies in their late thirties or well into their forties! This meant that it was essential for us to change this maternity site so that we could recruit the population sample we needed for phase 2. Ideally you want to make sure the sites you recruit from have the right population sample from the start.

Food, drinks and incentives go a long way if you are struggling with recruitment.

We have been very lucky to have had a budget for offering the women we recruit incentives in the form of shopping vouchers. However, I still struggled with recruitment at some of our project sites, so we decided to also offer women drinks and pizza for taking part in our focus groups. Not only did this make recruitment a lot easier, offering women food before we started our focus groups was a nice ice breaker to get conversation flowing. If you don’t have the budget or ethics approval for offering incentives in the form of payment, then offering food and drinks is a budget friendly way of being able to offer something small in return for your participants giving up their time to help with your research.

And now onto what I enjoy most about being a research associate on this project:

I can honestly say that I have really enjoyed being a researcher on this project. Yes, there have been a few setbacks on the way, but the work that I have been involved in has been really interesting. One of the tasks that I really enjoyed was doing a literature review on women’s views of contraception on social media. I watched and analysed videos and comments posted on YouTube to gain a better understanding of contraceptive misconceptions. Social media is an underused resource for research, however we live in an increasingly digital world and it would be a shame to ignore all the voices and views we can learn from through social media.

I have also really enjoyed the qualitative field work, such as running focus groups and conducting individual interviews with women we have recruited. We have been actively seeking women’s views throughout this project, and their views have shaped the design and content of our website. I may have been dreaming of focus groups and interviews at some point because we have conducted so many, but we wouldn’t have been able to create our website without the valuable feedback we have received.

Studying at PCPH,UCL: An international PhD student tips on surviving your PhD

Nathan Davies10 January 2017

In this post Ghadah Alkhaldi who was recently awarded her PhD from PCPH talks about her time here and how to survive your PhD as an international student.

Doing a PhD is not an easy, simple, or stress-free experience. PhD students go through years of endless deadlines, no breaks during weekends and quite often question their sanity about why they chose to do a PhD in the first place

I do not think I appreciated the challenges of being a PhD student until I started mine three years ago.  My experience at PCPH was also unique in a way. I was from Saudi Arabia -a socio-cultural context that is quite different from that of the UK; a non-English native speaker; and a novice researcher (I’ve always been a student).

I thought that if I was able to do a one year’s master programme at a UK university, it would not be that difficult to do a 3 year PhD. This assumption -I realised later on- was not exactly right…

Fortunately, I was lucky to do my PhD within PCPH, where I found a supportive, friendly and extremely helpful environment. Working in such an environment is an important element of survival for any PhD student, but specifically for an international student like myself. Doing a PhD is a lonely journey as my supervisor told me when I first started my PhD and she was right. It is especially lonely when you do not have the support circle you are used to your whole life, for example family and friends.

Hence, any PhD student needs to find a supportive and understanding environment, somewhere where there are researchers who were just recently awarded a PhD or other PhD students.

And that is my first tip for surviving your PhD: a supportive and helpful environment!

Indeed, I made sure to work most of my time in my office surrounded with other PhD students and early career researchers. They provided me with the professional and personal support and advice that I needed to maintain my sanity and ensure my PhD progressed well.

Another piece of advice is to read, attend talks and discuss research other than your own topic.  It will inspire you and may help add an element of creativity to your research. It will also deepen your understanding of the amazing research culture of the UK, appreciate the variety of research conducted all around the country, and provide you with good networking opportunities.

And do not ever forget to focus completely on finishing your PhD. Do not be distracted with other interesting non-PhD related projects. If you get distracted, there is a big possibility that in ten-years time, you might find yourself still a PhD student instead of a senior researcher in your field of choice. Seriously, I have seen that happen before.

My final tip is to make sure you have a good justification for any decision you make about the research in your PhD. Never decide on doing something whether it is related to collecting data, analysis methodology or writing up that does not make sense to you or you are not convinced by it, because you will need to defend it and defend it well. It is your PhD after all. Any PhD student should never utter these words ever: ‘my supervisor told me so’.

Finally, enjoy your PhD. Find any way to enjoy it, because you will live, breathe and dream about your PhD for three to four years. My method of enjoying my PhD was by celebrating the small successes no matter how insignificant they might have seemed to be!

There are many tips online and different published books on how to survive a PhD, I did not repeat those ones. I only shared what helped me pass and pass successfully.


A visit to UC Irvine: eHealth research and diabetes education in the United States

Nathan Davies7 June 2016

In this post Shoba Poduval from the e-Health Unit talks about her exciting visit to California as part of the Ubihealth exchange Programme.

In March, thanks to the UbiHealth Exchange Programme, I visited the Informatics department at University of California in Irvine (UCI) supervised by Gillian Hayes and Yunan Chen. Ubihealth is a global consortium of research institutions with expertise in technology and healthcare, and the exchange programme allows researchers from member institutions to share knowledge and apply it to their own fields of work.

During my visit I met with researchers and clinicians involved in eHealth and patient self-management support. Josh Tannenbaum is an Associate Professor whose research looks at the use of digital games as an educational tool in interactive storytelling and identity transformation, with the purpose of challenging people’s assumptions about others. Professor Tannenbaum suggests that interactive digital games could be developed which allow people to experience life with diabetes, acquire greater empathy, and interact with people with diabetes in a way that is more supportive of positive lifestyle changes.

I met with Terrye Peterson, a nurse and certified diabetes educator at UCI Medical Centre. Terrye delivers diabetes education by visiting patients on the wards to discuss their management and deliver the education. Most people with type 2 diabetes in the US do not receive any structured self-management education, and barriers include limitations to access due to socioeconomic and cultural factors, health insurance shortfalls, or lack of encouragement from healthcare providers to seek diabetes education. In England, referral to diabetes self-management education has become a national Quality and Outcomes Framework (pay for performance) item for GPs, incentivising them to refer patients to a programme. In the US healthcare is funded by government programs like Medicaid, private insurance plans and out-of-pocket payments, and there is no national standardised reward and incentive scheme for referring. Other issues for diabetes management in the US include unaffordable co-payments (top-up payments) for essential treatments and lack of integration between outpatient and hospital care.

I also visited the UCI Centre on Stress & Health which, together with the Children’s Hospital of Orange County, develops interventions to relieve the pain, anxiety and stress of disease and the healthcare environment for children. I met with Drs Michelle Fortier and Zeev Kain to learn more about their work on a web-based tailored intervention for preparation of parents and children for outpatient surgery (WebTIPS). The programme consists of an interactive website which teaches children what to expect from surgery, and skills for coping with anxiety prior to the surgery. There are games which allow children to place equipment on animated animals and deep breathing exercises to encourage calm. The team have published findings from their randomized controlled trial of the program with children age 2 to 7 years old undergoing outpatient elective surgery. They found that children and their families found the programme helpful, easy to use and it led to a reduction in preoperative anxiety.

Finally, I met with PhD student Kate Ringland who is studying an online community for children with autism built around the game Minecraft. Minecraft is a creative game which allows players to dig (mine) and build (craft) with 3D blocks whilst exploring a variety of terrains and landscapes. Kate’s research looks at how online communities can help support social interaction for people who find face-to-face communication challenging, such as children with autism. Her results suggest that people with autism are finding new ways to express themselves and connect with others in order to form communities.

Working at the eHealth unit has taught me about the potential for technology to change the way we interact with patients and deliver healthcare. UK eHealth research addresses some similar themes as that of our US colleagues, including patient education and social interaction, but there are also differences in our health systems which mean that interventions need to be implemented in different ways. We can learn from both our similarities and differences, and international exchange and collaboration is vital for sustaining this learning.

Acknowledgements: With thanks to UbiHealth, Nadia Bertzhouse, Elizabeth Murray, Nikki Newhouse, Aisling O’Kane, Louise Gaynor, UCI Informatics, Gillian Hayes, Yunan Chen, Josh Tannenbaum, Terrye Peterson, Michelle Fortier, Zeev Kain and Kate Ringland.