New Patient Safety Translational Research Centre PhD network

by Karen Considine (Centre Manager, NIHR Greater Manchester PSTRC), Kelsey Flott (Centre Manager, NIHR Imperial PSTRC) and Beth Fylan (Programme Manager, NIHR Yorkshire and Humber PSTRC)

PhD students linked to the three NIHR Patient Safety Translational Research Centres (PSTRCs) have a new opportunity to register for a PhD student network. The national drive for high quality patient safety research means that the NIHR has now invested in three PSTRCs from 2017-2022. Greater Manchester and Imperial PSTRCs retain their funding and there is now a new third Centre in Yorkshire and Humber. This extension to the PSTRC infrastructure has created opportunities to expand the number of NIHR funded patient safety projects and develop new patient safety research partnerships and networks.

One of these collaborative initiatives is aimed at offering development activities to PhD students by creating a network bringing together PSTRC research students from the three Centres into a dynamic research community. The PSTRC PhD network will encourage students to share information about their research projects and their developing research expertise and then collaborate to develop dissemination plans for their work. The network will be a showcase for the patient safety research projects students are delivering as well as a route to further enhance patient safety research skills by accessing expertise across the PSTRC infrastructure.

Rebecca Lawton, Director of the Yorkshire and Humber PSTRC, said:  “As a new PSTRC we are committed to collaborating with our partners at Manchester and Imperial. We pitched the idea of a PhD network to NIHR and they were extremely supportive. The aim of this network is ensure that the patient safety research leaders of the future have an opportunity to learn from each other and also from the wealth of expertise across the three Centres. I am looking forward to watching the network grow and to learning from the next generation of patient safety researchers ”.

Stephen Campbell, Director of the Greater Manchester PSTRC, said: “Research capacity building is a core and crucial priority for us and all the PSTRCs. The PhD network provides a splendid opportunity for researchers from across the three settings to learn from  each other, research leaders from each site and the importance of collaboration in research”.

Ara Darzi from Imperial PSTRC adds: “Together the three PSTRCs aim to develop evidence based interventions to improve safety across the NHS and health systems abroad. Central to this mission is the training of our students and researchers. This PhD network will provide an opportunity for students across the PSTRCs to collaborate, share insights and create a national network for patient safety research.”

Increasing the reach of PRIMER

by Sally Giles, Research Fellow in NIHR Greater Manchester PSTRC

The PRIMER (Primary Care Research in Manchester Engagement Resource) group was established in 2008 to work with researchers within the Centre for Primary Care and University of Manchester.  It is located in the NIHR School for Primary Care Research (SPCR) in Manchester.  PRIMER is a group of patients, carers and members of the public who work with researchers across the NIHR SPCR, Greater Manchester PSTRC and The University of Manchester.

Carole Bennett, former Chair of PRIMER, says:

“Here at PRIMER, we help to make sure that patients and the public can shape Primary Care research.  We work closely with researchers so that they know what real people want and need from NHS primary care. We help to ensure that research is relevant to our health and can make a difference to our lives.

“Our members have a very wide range of backgrounds.  Some of us have particular health conditions, some are carers, and some have been involved in health care.  We all have an interest in health and research and in getting involved.

“I’ve been a member of PRIMER for several years now.  I can honestly say that it has been a fantastic experience.  The researchers that we collaborate with really take on board our ideas and suggestions, leading to their research being relevant and helpful to patients and carers.  It is great to feel that we are making a difference.”

PRIMER has been involved in running a number of innovative workshops for members of the public and researchers.  These have included two “hack days” where members of the public pitched their research ideas to each other and to researchers, and then worked through how to develop the ideas using a research toolkit, and a “Managing Difficult Situations” workshop where members of the public and researchers discussed how to address some of the more difficult situations that can arise when undertaking PPI.  Members of PRIMER have also co-developed and co-delivered training about PPI to researchers and medical student undergraduates.

The plan going forward is to build on the ideas generated from these workshops and embed the learning from within PPI structures across the university.

How was it for you? Reflections on involvement

This edition’s reflection comes from Kay Gallacher, a member of the public who is involved in the NIHR Greater Manchester PSTRC Patient Safety Guide.

Why did you become involved in the Patient Safety Guide project?

I have long been aware of the issues that elderly family and neighbours, in particular have experienced trying to manage contact with their GPs and pharmacies.  The brilliant, simple idea behind this Patient Safety Guide seems to address many of the concerns in a practical and tangible way.  I was also attracted by the fact that this was a collaborative project where patients, carers and medical professionals all have an equally important input into the design and delivery of both the paper- based Guide and the mobile app, hopefully making it a 360 degrees (all round) useful tool.

How do you think the Greater Manchester PSTRC benefitted from your involvement – what difference do you feel that you made?

I guess it’s for others to judge what impact, if any, I’ve had on the project.  However, I’ve brought a genuine understanding of the problems patients face when coming into contact with primary care and producing leaflets and guides was bread and butter for me in my marketing career.  So, I hope I’ve been helpful in producing and delivering an effective product.

How do you feel that you benefitted from your involvement?

I am involved with several projects, but this one in particular has sharpened my understanding of how the GP/ patient dynamic operates.  I came to this project with a patient’s viewpoint but I now have a better insight into the challenges GPs face in establishing and maintaining effective communication with patients.  Also, the deep personal satisfaction of feeling that I’ve made a positive contribution.  Importantly, I can’t overstate the pleasure I’ve derived from being part of a cohesive, effective and well-led team composed of great people from a wide range of backgrounds.

Would you recommend becoming involved in research to other patients and carers? If so, why?

Definitely!!  What you get from being involved largely depends on what you put into it but I can absolutely guarantee that, regardless of your starting point, you will have a better understanding of the workings of medical research and the wider world of medicine in general.

PhD fellow focus: Anna-Sophia Wawera

by Anna-Sophia Wawera

Anna-Sophia Wawera joined the PSTRC Marginalised Groups theme as a PhD Fellow in April 2018. Before coming to the University of Manchester, she completed a Master of Science in Public Health at Sheffield Hallam University. Throughout her Masters, she was involved in several research projects examining student experience and health-related issues within the university. In addition, she worked for a medical device company in Berlin, Germany, which developed a therapy for patients with long-term conditions causing visual impairments. Based on her previous experience, her main research interests lay in the field of public health promotion among vulnerable population groups, with particular focus on young people and chronic condition management.

Anna’s PhD will focus on supporting and promoting safety in the context of childhood long-term conditions, with Susan Kirk and Caroline Sanders as her lead supervisors. With the rising prevalence of long-term conditions among children and the increasing focus on self-management, a growing number of children are being cared for at home instead of within the hospital setting. While this trend provides many benefits for children, as it enables them to grow up within their family environment, it also poses considerable challenges for primary caregivers, mainly the parents, as they are faced with additional responsibilities related to the care and management of their child’s chronic condition.

To date, this trend towards home-care and the increasing transfer of responsibilities from care professionals to families has been inadequately examined in relation to patient safety and the potential risks it may pose to young people with long-term conditions. This research will therefore examine how children/young people, parents and healthcare professionals perceive, monitor and manage safety within the home setting.  The final  aim is to co-design safety tools in close cooperation with key stakeholders to further support the promotion and improvement of patient safety among this vulnerable population group.

Past PhD Fellows: Where are they now? Paolo Fraccaro

In this series, we catch up with past Greater Manchester PSTRC PhD Fellows to see what they are doing now and how their PhD projects affected patient safety. This edition, our past PhD Fellow is Paolo Fraccaro.

What did you learn during your PhD?

Almost one and a half years after finishing my PhD, I cannot stress enough what a great (although painful at times) experience it has been. I have learned a lot from many different perspectives, including technical and interpersonal skills. Particularly, I have strengthened my skills in health informatics and data science, while learning to be autonomous and to interact with many different professionals with different backgrounds. I also had the opportunity to present my work at international conferences, and visit the USA for two months to work with colleagues overseas. I feel this contributed in broadening my horizons, making me a better researcher.

How has your PhD changed the patient safety landscape?

My PhD helped to show how using technology to contextualise information with technology is essential to improve patient safety. My studies ranged from showing how different presentations of laboratory results influence patient interpretation and actions, to developing and testing computer algorithms that can predict in advance specific outcomes (e.g. death and chronic kidney disease), taking into account the specific patient context (e.g. previous medical history). Such algorithms, if integrated in GPs computer programs, have the potential to support primary care doctors in identifying patients at risk quickly.

What you are doing now and where you see yourself going in your future career?

For the last year and a  half, I have worked as a postdoctoral Research Associate in a project called “The Wearable Clinic” led by Niels Peek in the Centre of Health Informatics at The University of Manchester. The aim of the project is to tailor monitoring and treatment of patients with chronic conditions, by using information from wearable devices (e.g. activity trackers or smartphones) as well as data reported by patients themselves. In September, I will start in a new role as a Data Scientist at IBM Research UK . Although I am sad to leave after five amazing years at The University of Manchester, I am really excited to begin this new adventure in industry!

Exploring self-management and culturally appropriate patient feedback among British Bangladeshis in Manchester

Visual minutes from the workshop capture the main discussion points

by Papreen Nahar and Caroline Sanders

Previous Patient and Public Involvement (PPI) workshops within the DEPEND project have indicated a need to consider Black and Minority Ethnic (BME) groups. On September 21st, 2017,  two public engagement workshops were conducted in Manchester with a BME population – namely British Bangladeshis – to discuss their views and experiences of ‘self-management’ for long-term conditions, as well as the capturing and use of patient feedback and the potential of digital interventions. British Bangladeshis are a significant immigrant population, comprising 13% of foreign-born residents in England. In Manchester, Bangladeshis ranked second among South Asians for persistent inequalities reported, particularly Bangladeshi women. To maintain culturally appropriate language and gender segregation, the workshops were conducted in Bengali, and separately with men and women. Two professional artists were invited to prepare visual reports on the sessions. 

The Bangladesh High Commission, Greater Manchester Bangladeshi Association (GMBA), and Krishnochura (a British Bangladeshi cultural group) were the partners for these workshops. UK-based Bengali TV channels also highlighted the workshops, as these events were the first of their kind.

Following are the highlights from the workshops:

On Self-Management

• Neither men nor women were generally aware of the concept of ‘self-management’, and they did not consider themselves as practicing self-management for chronic conditions.
• Culture-specific lifestyles, food habits, notions about health & wellbeing, and specific gender roles for women were considered the other barriers for self- management.

On Patient Feedback

• Most of the men and women have never been asked to provide feedback by the authority.
• The general fear is that the negative feedback may affect their future treatment at GP centres.
• They felt unstructured questionnaires and a bi-lingual feedback system would be useful.

On Digitalisation

• Remote monitoring using digital tools (e.g. mobile apps) was viewed as a potential way of increasing awareness of self-management as well as providing feedback.
• Digital illiteracy and language barriers were perceived to be obstacles to the use of digital tools in healthcare. However, the joint family structure (which is a common practice among this community) was considered an enabling factor in this regard, as the digitally literate younger generation could help the digitally illiterate older generation.

It was recommended that further research needs to be conducted to develop culturally sensitive co-designed digital tools to improve feedback and self-management.

Development and validation of a new approach to enhance patient engagement in late effects lymphoma research

Kim Linton, one of the supervisors on this project

by Kim Linton

Treatment for Hodgkin lymphoma (HL) is associated with a risk of late-effects (consequences of treatment occurring sometime after treatment took place), including secondary cancers of the breast and lung, cardiovascular disease, osteoporosis and infertility. All of these effects undermine long term patient safety and quality of life. Most survivors are unaware of these risks as late-effects education and lifestyle advice is not routinely offered despite a greater awareness of risk amongst clinicians. Moreover, the majority of cancer survivors have limited access to information, as they are not routinely followed up by oncology services.

Research to reduce late-effects is urgently needed, but there are no established methods of engaging, educating or supporting patients who are likely to have high levels of anxiety and support needs when approached.

This NIHR Greater Manchester PSTRC-affiliated project aims to develop tools to engage HL survivors to participate in research aimed at reducing the risk of late-effects and improving the long term safety of lymphoma treatment. Tools will be tested in a lung health check pilot study incorporating screening and lifestyle advice.

The study population will be identified from the Centre for Childhood Cancer Survivors Institute at Birmingham University.

• In Part 1, around 16,000 HL survivors will be invited to complete a survey about their health, late-effects knowledge, follow-up status, risk factors, and to consent to future invitations to engage in late-effects research. Reasons for withholding consent will be explored. A case control study using collected data will be performed to identify risk factors for developing secondary lung cancer.
• In Part 2, randomly selected consenting patients will be invited to focus groups to help develop/test tools to engage survivors in late-effects research, and education and support materials for publication in partnership with Lymphoma Action.
• Part 3 will test the developed tools in a lung health check pilot study. Consenting patients with a calculated lung cancer risk of more than 1.5% per year will either receive a ‘standard’ letter or the new approach.  They will also be invited to participate in risk intervention, including smoking cessation advice and low dose CT thorax, using screening protocols established for the general population. Up to 100 participants will be scanned, and outcome measures collected including attendance rates, patient experience, quality of life, anxiety and results of intervention. Results will be compared in the two groups to validate the new tools. Applying standard screening protocols to high risk HL survivors will also be explored. Experienced study nurses will be available throughout to support participants engaged in all parts of the study.

The study aims to deliver a validated approach to enhance patient participation across a variety of late effects research topics. Results of the lung pilot will inform the feasibility and design of a further lung screening study in HL survivors.

The project falls within the Safer Care Systems and Transitions, Medication Safety and Marginalised Groups themes of the PSTRC, and has been endorsed by the National Cancer Research Institute (NCRI) Screening, Prevention and Early Diagnosis Advisory Group and The Manchester Biomedical Research Centre (BRC). The project will be supervised by experts in cancer sciences, lung cancer screening, psychology, population health and epidemiology.

Supervisors: Kim Linton, John Radford, Chris Armitage, Phil Crosbie and Mike Hawkins