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Researcher Tips for Conducting Remote Research in Older Populations

Megan Armstrong16 December 2021

Tasmin Rookes

This blog is written by Tasmin Rookes, Research Assistant for the PD-Care programme. Tasmin also runs a Research Assistant group – if you’d like more information about this group please email Tasmin here: t.rookes@ucl.ac.uk

Since the COVID-19 pandemic research activity, such as identifying, consenting, and assessing participants has been conducted online and remotely. With many clinical populations being older adults, without consistent levels of technology knowledge, this has introduced some challenges. Reflecting on the PD-Care feasibility study, I share our experience and learnings of conducting remote research with people with Parkinson’s.

Identifying potential participants

On the morning of clinics, send reminder emails to the clinical teams to remind them to approach potentially eligible participants with a copy of the participant information sheet.

When following up with a phone call to discuss further, have a loose script with the key information points participants need to know, including the next steps involved to get them enrolled.

Where relevant, recruit or include participants carers or family members to assist with explaining the study, setting up technology or assisting with future research activity, particularly if the person has mild cognitive impairment.

Consenting participants

If obtaining consent online, follow-up with phone calls or emails to reminder people to complete the consent form and keep it at the forefront of their mind. Older people often aren’t used to managing an email inbox, so sometimes resending the link to the consent form can help.

If obtaining written consent, via the post, follow-up after one week of posting to determine if it has arrived and if they have any questions. Be prepared for postal delays and always offer to resend out if participants have waited a long time.

If obtaining verbal consent, ensure you have posted or emailed a copy of the consent form, so participants can follow along. Ensure they are engaged by asking them to state their name and date for the recording. Read through each statement clearly, asking participants to confirm they consent to each statement. Be prepared for questions and consider that your answers are being audio recorded. Save audio recording in a secure location and complete a consent form stating verbal consent was obtained, to send a copy to participants, GPs, and upload to patient notes.

Completing assessments

Be aware of potential risk and safeguarding. If a participant discloses something concerning, follow the guidance in the study protocol and ask for advice from senior colleagues. Keep records of all decision making and collect the participants GP and clinical team contact details for future use.

Completing assessments can be lengthy and is more tiring when completed on a screen. Be transparent about how long they will take and offer comfort breaks or break into shorter sessions where appropriate. Also, providing a written copy of the assessments to participants can help them to follow along with the questions as they are being asked. Allow plenty of time for the assessment and give participants time to think and respond.

Consider whether the assessments you want to do can be completed remotely. If not, consider self-report measures or look for measures that have been adapted to be delivered remotely.

It is inevitable that some assessment appointments will be missed by participants. Send reminder letters, emails, or phone calls to prevent this from happening and provide them with your contact details, so they can inform you if they can no longer attend. Try to reschedule as soon as possible, particularly for follow-up assessments where timelines can be tight.

Be prepared for technical issues and understand how to talk someone through joining calls using the chosen software. Get an understanding of how confident they are, so you can support them and factor this into the time allocated.

Key messages

Most people are happy to conduct research remotely and on the whole older populations are comfortable using technology if they are supported.

Have a clear process in place and test with the team or PPI members before starting to recruit, to iron out any potential issues.

Allow plenty of time at every step, being patient, friendly and calm. You may be the only person they speak to that day, or they may be anxious about using the technology or completing the assessments, so this may help put them at ease.

Consider all potential impairments participants may have, including vision, hearing and speech, and have strategies in place to overcome these and be inclusive. These include, offering study documents in large print, providing contact through email or letter, and having a carer or family member present to support.

Be organised, keep logs of what has been done and what is still to do, so recruitment and follow-up schedules are adhered to.

As we develop more digital interventions and conduct research activity remotely, adapting our approach and using the tips outlined above, successful research conducted remotely with older populations is not only feasible, but can be successful and beneficial.

Bridging the gap: diversifying education in primary healthcare

Megan Armstrong20 October 2021

This blog post is written by Sara Thompson (GP), Morounkeji Ogunrinde (GP), Zenni Emeka-Enechi (Medical student) and Natalie Amavih-Mensah (Medical student).

Racism in healthcare concerns everyone

Racism and racial inequality are deeply rooted in societies and institutions worldwide. Britain is no exception.

For many, 2020 was a clarion call to address various ills plaguing our society. Although the time in isolation and lockdown brought significant emotional stress, it also forced us to confront long-standing systemic concerns based on race and our misconceptions of one another. In 2020, the BMJ published its first special report on racism in healthcare since its inauguration in the 1800s.1 In the UK, racial disparities occur in fields as varied as genetic counselling, artificial intelligence, and medical school admissions.2 These inequalities expose ethnic minorities to a higher risk of chronic conditions.3

Racism, not race, perpetuates health disparities

The NHS is regarded as a fair and equitable tool for distributing health care services, and its accomplishments have been praised worldwide. Yet, despite this, one in five black women in the UK die in and around childbirth.4 Black men are ten times more likely to face discrimination when presenting with a mental health illness.5

Training on microaggressions and implicit bias have minimal effect on outcomes and cannot facilitate change without a corresponding shift in the system.6 Attempts to haphazardly reduce these disparities without addressing the root causes have been problematic e.g. the #NotsoNICE campaign.7 NICE proposed draft guidelines to reduce maternal mortality among Black, Asian and minority ethnic people by encouraging inducing labour.8 The guideline did not address the principal factors of racism and neglect, sparking outcry and disillusionment. Race-based medicine provides crude shortcuts to clinical judgement that is harmful to patients from BAME communities.9

World-renowned science journalist Angela Saini refers to race as a social construct that we should challenge. She reports that we “tailor” clinical decisions about patient treatment considering race without any substantial scientific basis of delineating what terms like “Caucasian” or “Black” mean10; we have created a subjective ‘science’ that is not scientific at all.

The healthcare and minority ethnic groups divide

Patients of colour are disproportionately vulnerable to misdiagnosis and undertreatment. Consequently, patients from ethnic minorities have poorer outcomes in healthcare and fewer opportunities to access healthy living.3

A lack of diverse, inclusive education precipitates insidious doubt and mistrust recently exemplified by the suspicion and hesitation of the ethnic minorities communities towards the COVID-19 vaccine.11

Health Care Professionals (HCPs) and students come to accept racial biases and aggressions as the norm. Some  professionals from ethnic minority groups are reticent to voice concerns for fear of being undermined or receiving backlash. HCPs from ethnic minority groups are more likely to be blamed for errors and are victim to disproportionately more disciplinary action.12

Students from ethnic minority groups may not report racial aggressions because they believe their medical school will not take them seriously.13 There is a performance gap in UK medical schools. Black students are more likely to underperform compared to their white counterparts.14

People from ethnic minority communities are less likely to participate in research studies and initiatives to improve health outcomes. Thus, there is less data available, biasing research and policy.15

Natalie’s experiences as an ethnic minority patient

Feeling unheard and misunderstood is debilitating. I struggled with acne since high school. I was only referred to dermatology after three years. I cannot be sure if my race played a part intentionally, or unintentionally; however, significant distress was caused.

Insecurities, caused by acne, stifled my confidence. I believed that the condition defined me. My GP practice consistently dismissed my concerns making me think that the acne was my fault. I felt powerless and alone. Understanding the variations in presentation among different skin tones is not just about treating a single condition; it is also about preventing and remedying the subsequent destructive psychological thinking patterns.

The Diversifying Dermatology in Primary Care Working Group

Colours of the World Skin Tone Crayons range in 2020 so that “all children can colour themselves”. We need to ensure that our medical education shows the same awareness of skin tones and that dermatological conditions can present differently on different skin colours.

We aim to understand the patient experience and to increase the diversity of educational resources available, we want to raise awareness that conditions as common as acne and eczema present differently on different skin tones and educate on how to better diagnose and manage these conditions on darker skin. We won a “Listen and “Learn” grant, with which we held interviews to understand service users’ experience. Mimms Learning has developed an e-learning module addressing several questions on how and when black skin will look significantly different. 16 Our collaboration with Black & Brown Skin aims to facilitate community members to continue to support each other by creating a forum for shared experiences and a growing image library accessible to clinicians worldwide.

We hope that, by increasing the variety of resources available, the quality of education will improve, leading to higher quality care for patients thus enhancing patients’ trust in the health care service created to treat and serve them.

Conclusion

Reform takes time. We need to overturn and redefine ideas about race that have persisted for centuries. There will be uncomfortable conversations and we will have to overcome indifference and resistance to change.

Decolonising the curriculum is not a fad; it is something that we must continue, even when the world is not watching. With dedication, persistence and unity, there is hope for a better future – for all skin tones.

Additional Information

Quiz on Dermatology in Black and Brown Skin

Bimpe and Zainab: Bimpe (UCL medical student) talking to Zainab about atopic dermatitis.mp4

Zenni and Malone:Zenni (UCL medical student) interviewing Malone Mukwende (Founder of blackandbrownskin.co.uk).MOV

Honey and Natalie:Honey (UCL medical student) talking to Natalie about acne vulgaris.mp4

References

  1. https://www.bmj.com/racism-in-medicine
  2. Adebowale, V., Rao M. Racism in medicine: why equality matters to everyone. BMJ [online] 2020;368:m530 . Available from: doi: https://doi.org/10.1136/bmj.m530
  3. McKenna, H., 2019. Professor David Williams on racism, discrimination and the impact they have on health. [podcast] The King’s Fund. Available from: <https://www.kingsfund.org.uk/audio-video/podcast/david-williams-racism-discrimination-health>
  4. https://www.bmj.com/content/372/bmj.n152
  5. https://www.mind.org.uk/news-campaigns/legal-news/legal-newsletter-june-2019/discrimination-in-mental-health-services
  6. Sharda S, Dhara A. It’s Time To Talk: Gender and Race in Medicine. CMAJ Blogs July 2019
  7. Lewin, L. The #NotSoNice Campaign [online]. The OBS: England; 2021 [Accessed 30th August 2021] Available from: https://the-obs.co.uk/your-doula/
  8. National Institute for Health and Care Excellence. ​​NICE recommends offering women induced labour earlier in new draft guidance [online]. NICE: London; 2021 [Accessed 20th August 2021]. Available from:https://www.nice.org.uk/news/article/nice-recommends-inducing-women-in-labour-earlier-in-new-draft-guidance
  9. Chadha, N., Lim, B., Kane, M., et al. Toward the Abolition of Biological Race in Medicine. UC Berkeley [online] 2020; 4-6, 16-19. Available at: <https://escholarship.org/uc/item/4gt3n0dd>
  10. https://www.angelasaini.co.uk/
  11. Lockyer, B, Islam, S,  Rahman, A, et al;  the Bradford Institute for Health Research Covid-19 Scientific Advisory Group.  Understanding COVID-19 misinformation and vaccine hesitancy in context: Findings from a qualitative study involving citizens in Bradford, UK. [online]. Health Expect.  2021; 24: 1158– 1167. Available from: https://doi.org/10.1111/hex.13240
  12. Majid, A. What lies beneath: getting under the skin of GMC referrals BMJ [online] 2020;368:m338 . Available from: doi: https://doi.org/10.1136/bmj.m338
  13. Kmietowicz, Z. Are medical schools turning a blind eye to racism? BMJ [online] 2020;368:m420 . Available from: doi: https://doi.org/10.1136/bmj.m420
  14. Jones, A. C. , Nichols, A. C. , McNicholas, C. M. & Stanford, F. C. Admissions Is Not Enough: The Racial Achievement Gap in Medical Education. Acad Med [online]  2021;96 (2):176-181. Available from: doi:10.1097/ACM.0000000000003837.
  15. Smart, A., Harrison, E. The under-representation of minority ethnic groups in UK medical research. Ethnicity & Health [online] 2017;22(1): 65-82. Available from: doi: 1080/13557858.2016.1182126
  16. https://www.mimslearning.co.uk/learning-paths/skin-of-colour-disorders-of-pigmentation-and-hair-and-scalp-conditions

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.

References

  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.

References

  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).

Summary

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.

 

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

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.

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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.

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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.

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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.