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The unexpected consequences of researching unexpected consequences: The DECODE Study

LorraineMcDonagh15 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.

 

Before

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.

 

During

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.

 

After

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

NathanDavies20 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

NathanDavies10 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

NathanDavies28 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

NathanDavies23 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

NathanDavies10 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

NathanDavies7 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.

Roles of sleep and circadian rhythms in the origin and nutritional management of obesity and metabolic disease

NathanDavies18 January 2016

In our latest blog post Fiona Giles talks about her attendance to a conference on the importance of sleep in our health. 

In December I was lucky enough to attend a two day conference held by the Royal Society of Medicine and the Nutrition Society on the importance of sleep in health.  This was a fantastic opportunity to hear some new and original research on the importance of sleep quality and duration in reducing obesity and the risk of metabolic diseases such as diabetes.  The conference covered a wide variety of topics relating to sleep and circadian cycles, ranging from the importance of vitamin D for sleep to the effects of shift work and the importance of regular meals in maintaining a healthy body weight.

This conference was of interest to me both as a member of the eHealth Unit, working on the HeLP-Diabetes project and as a Public Health Nutritionist.  Several research studies presented across the two days demonstrated interesting findings in relation to sleep and diabetes. These studies showed that longer sleep duration was associated with better glucose control and less variation in glucose levels.  This suggests that improving one’s sleeping environment, going to bed earlier and using relaxation techniques could all help diabetic patients better control their condition.

The importance of regular meals and, in particular, eating breakfast was also mentioned throughout the conference.  The take home message of many conference papers was that eating earlier in the day was related to significantly higher weight loss than eating late in the day.  Furthermore, studies showed that participants who skipped breakfast were significantly less likely to lose weight, over six weeks, compared to participants who did eat breakfast, even though the breakfast group consumed substantially more calories.  An interesting point considering breakfast is the meal most often skipped by those trying to lose weight!

Although there is lots of interesting new research on sleep and the effects of circadian cycles on metabolism, much of the evidence comes from rodent studies and small, limited, human cohorts.  Therefore it is difficult to generalise findings to the population as a whole. Nevertheless, current evidence shows us that improved sleep quality and duration could have a substantial effect on reducing the risk of metabolic diseases and be a key tool in helping diabetic patients to better control their condition.

 

 

HeLP Digital Community Interest Company (CIC)

NathanDavies7 December 2015

In this pHDlogoost Orla O’Donnell from the eHealth Unit talks about the HeLP Diabetes research and rolling it out across the NHS with a not-for-profit social enterprise. 

Current NICE guidance recommends that anyone who is newly diagnosed with type 2 diabetes (within the last 9 months) should be offered structured education but all of the current education offered by the NHS is delivered face to face in a group setting. This means that take up can be low as it’s harder for people who work or have caring responsibilities to attend. The offer of online education in addition, or instead of is one potential solution to increasing uptake as it’s more available and attractive to those who cannot or do not want to attend groups. Online interventions are also considerably cheaper to run en masse than repeated face to face sessions and have the added advantage of being able to offer on-going access to information about the condition.

In light of this, Elizabeth Murray and our team at the eHealth Unit have developed an innovative and sophisticated online self-management programme (called ‘HeLP-Diabetes’) and an accompanying structured education pathway (called ‘HeLP-Diabetes: Starting Out’) for adults with type 2 diabetes.Logo edited

HeLP-Diabetes stands for ‘Healthy Living for People with type 2 diabetes’ and it was developed through funding from an NIHR Programme Grant for Applied Health Research. With the research programme coming to an end next year and due to popular demand for the programme (from CCGs in London and now England wide), Elizabeth decided to set up a not-for-profit social enterprise (a spin out Community Interest Company/CIC) to roll out the programme across the NHS and I’ve been working closely with UCL Business to establish this over the last few months.

In 2014 we applied to, and were successful in being selected for the Health and Social Innovators (HSI) programme; an accelerator programme for small start-up companies offering a 4 month incubator scheme plus financial investment which we will use to cover the costs of setting up the CIC (legal, accountancy fees, etc). The programme involved colleagues and I attending a number of different seminars and workshops on subjects such as financial modelling, marketing, competitor analysis, elevator pitching and legal matters. There were 7 successful ‘Ventures’ who took part and it was a really worthwhile and enjoyable programme. I managed to establish excellent networks and acquired some quite influential business mentors. I’ve since been in contact with colleagues at UCL Partners, and others and have met with some influential people at NHS England, and Diabetes UK as well.

Upon completion of the HSI Programme there were various steps we needed to follow and forms we needed to fill out to set up and become a registered company which we did in June 2015. One of the biggest challenges I had was the protection of IP at the other institutions who had allowed us to use content within the programme, with the nature of academic research being so collaborative, however, persistence paid off and we’re ready to commence with the roll out now all of the collaboration agreements are agreed.

The sales aspect has also been a learning curve but on contacting NHS commissioners to tell them about the programme the initiative has been welcomed (by most) with open arms. I’ve been invited to various meetings to present and am having fun travelling the country to do so! We’ve now got four contracts in progress with CCG’s who are going to commission HeLP-Diabetes which is offered free at the point of delivery as part of a menu of options for patients to choose from.

What’s made my job easier is the fact that good quality, trusted online education for Diabetes was clearly something which was much wanted and needed so the requirement was already there; but also the fact that HeLP is a great product with an excellent team behind it to work with.

Orla O’Donnell (o.o’donnell@ucl.ac.uk)

 

This article presents independent research commissioned by the National Institute for Health Research (NIHR) through a Programme Grant for Applied Health Research (RP-PG-0609-10135). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

Dr Rosie Webster talks about the E-Health unit’s condom use intervention project: Podcast

RosieWebster30 April 2014

The sexual health research network (SHRN) is designed to bring together academics across disciplines, working in sexual health. Not only do they provide a community for collaboration and knowledge sharing, they also assist with dissemination by circulating a weekly ’roundup’ of all research in the area. They have recently started recording and publishing podcasts – conversations with sexual health researchers, talking about their work. The theme for the first few is ‘technology’, and Rosie Webster of the E-Health unit was asked to talk about the project she works on – designing and evaluating an online interactive intervention to improve condom use in men. To listen to the podcast, follow this link:

http://www.sexualhealthnetwork.org.uk/podcast_ep2_rosie_webster/

This project has been funded by the NIHR HTA programme (http://www.hta.ac.uk/project/2898.asp). The views and opinions expressed are those of Rosie Webster and do not necessarily reflect those of the Programme, NIHR, or University College London.