Aims

Our overall aim is to raise awareness and tackle misinformation around immune health through public engagement with research (PER) as we believe this is one of the crucial and unaddressed reasons why patients with immune problems (immunodeficiency) suffer long diagnostic delays. Better understanding of immune health will help to slow the spread of misinformation around immunity and ultimately we hope lead to earlier identification of symptoms.

To achieve this we aim to:

1) Enhance the basic knowledge of immune health in specific audience segments in Birmingham as well as a broad cross-section of publics through a programme of digital and ‘in person’ activities

2) Facilitate engagement with immunology in A-level and medical students through a schools research taster course

Immunodeficiency may be primary (PID) / genetic (which is relatively rare, average incidence being 7.6 per 100,000 live births in the UK [1]) or secondary (SID) (increasingly common due to modern medicines and an ageing population). Both result in recurrent, severe and unusual infections that reduce life expectancy and impact on quality of life. This is exacerbated by diagnostic delay which is 7 years for PID [2]. Shortening this time would improve quality of life for example by reducing time off work or school from illness and also life limiting damage to body caused by infection. There has been only recent awareness of the increasing frequency of SID and how this impacts on an individual and more collectively on health service utilisation. Infection accounts for 11% (5.3 million) of all NHS bed days. The patients most at risk of admission are those with chronic disease and an associated SID [3]. Earlier recognition of the immune deficiency would allow earlier intervention or prevention, leading to reduced morbidity and mortality for patients, reduced antibiotic use and reduced hospital admission.

We consider the main barrier to timely diagnosis of these complex and sometimes devastating diseases is a lack of awareness amongst publics and health care professionals. To address this we propose a package of coordinated public engagement activities to promote awareness of immune health and to empower undiagnosed patients and healthcare professionals. We have a unique opportunity to deliver our main outcome because Birmingham has won the bid to host the European Society of Immunodeficiency (ESID) meeting in October 2020. This will be hosted at the International Convention Centre in Birmingham which is a busy public thoroughfare and is collocated with the Library of Birmingham, the most visited attraction outside of London [4], where our public engagement activities will be hosted.

Our strategy is multi-pronged as we recognise that misinformation around immune health exists in all sectors of society and healthcare. Medical students frequently describe immunology as ‘more difficult’ than other disciplines and use of ‘alternative approaches’ to improve immunity i.e. through wellness lifestyles or supplement use extends throughout a range of demographics. Whilst we plan in the future to use our learning and content collected/created through this project to develop CPD resources for GPs (including a Royal College of General Practitioners accredited MOOC), we consider public engagement to be the key underserved need in this area. Particularly given that it is often the patient that asks the question ‘is there something wrong with my immune system’? Ultimately, to close the loop we need to ensure that we develop a legacy by breaking down barriers to studying immunology in school and medical students selecting immunodeficiency as a specialism, which is why we have focussed this project around a ‘hands on’ research experience for these groups. We will then capitalise on the capacity being built by these students through their in-depth engagement to reach out and engage their networks of families, friends and teachers through our public Immune Health Gala, which will also bring these poorly engaged groups into dialogue with patients, clinicians and nurses attending the ESID conference.

Outputs and Outcomes

We will achieve our overall aim through the following 2 work packages:

1.      Immune Health Gala

We will develop reusable engagement materials that can be used with the general public during the ESID 2020 conference and reused to tour around medical facilities to promote awareness of immune health in patients and their families. We will create an Immune Myth-Busting Pop-Up Shop in collaboration with Sense About Science. The pop-up shop will be launched as part of our public Immune Health Gala during ESID 2020 and will then tour to medical facilities such as Birmingham’s Queen Elizabeth Hospital. The event will be promoted through internal and external University and hospital channels including using previously successful immune health fliers with headline ‘Sense Behind the Science’ facts. The stand will be staffed by researchers, immunologists and Ask For Evidence ambassadors who will guide visitors though the evidence behind the hearsay, answer questions and deliver short ‘soap box science’ talks. This multi-platform engagement will include:

  • Physical props will be created with a message (e.g. orange juice – “can vitamin C cure the common cold?” which will be informed by our work with Sense About Science linked to the Ask For Evidence campaign).
  • Quizzes and games to test and explore knowledge by completing quiz games such as; ‘Bad luck versus bad health’ and ‘How to boost the immune system’.These quizzes will be a fun and interactive way for visitors to engage with the research, but will also help us to evaluate the effect of the interaction and inform us about immune health beliefs that can be used to target engagement with patients going forward. 
  • Patient voices, which will be heard through all threads of this application. At the conference specifically they will be voiced through short ‘pill box patient’ talks from some of the 600 patients who attend ESID (IPOPI is the integrated strand for patients), plus screens and posters with patient testimonials. We are supported in this endeavour by PID UK – a national patient group that have contributed to this application. They will also disseminate materials created as well as a survey to reassess diagnostic delay for immunodeficiency in the UK. All involved patients will have the opportunity to attend ESID sessions for free.
  • Immune health exhibition. We have secured the opportunity to continue our presence in the Library of Birmingham for two months after ESID by displaying information, dissemination materials and visuals from the project in the main public exhibition space.
  •  “Are you SensImmune?” online campaign, including social media presence, website, blog, videos, etc, linking in with supporters, partners and relevant groups/individuals with an established following in science myth-busting or understanding immunity/wellness. For example: University of Birmingham, Queen Elizabeth Hospital, Prof Alice Roberts (hosting our opening ceremony), Sense About Science/Ask For Evidence campaign (for which one of our project team is an Ambassador), Angry Chef/Anthony Warner (also an Ask For Evidence Ambassador), who between them have an online reach of hundreds of thousands.
  • Conference opening ceremony and student poster session – we will open ESID 2020 with a ceremony with a difference including a discussion to highlight the need for better dialogue between patients, nurses and clinicians, hosted by Prof Alice Roberts (broadcaster and University of Birmingham Professor of Public Engagement with Science), open to students and their families and which will be live streamed online. We will also bring the ‘conference experience’ out from behind closed doors to engage the students and public groups through hosting a public session focussed around the posters created by the students. This will help to open up dialogues around how research works and how the results are interrogated, built upon and taken into practice by the others in the field.

The ICC and Library of Birmingham are offering their public space to our bid because this work correlates with Library of Birmingham / Birmingham City Council aims to support projects that improve health and wellbeing for Birmingham residents.

2.      Research Taster Projects

We recognise that attitudes to immunology in young learners is a key area where engagement is needed. Therefore, we plan a hands-on immunology research taster-project at the University for Year 12 school students who are from widening participation backgrounds and have an interest in studying medicine. Our project design was developed in collaboration with local Year 12 students that contributed to a focus group and the University of Birmingham Outreach Team to ensure maximum value and accessibility for students taking part. This work-package will comprise:

  • A hands-on laboratory research project. Delivered over 4 months and including two, full-day sessions at the University of Birmingham Medical School to offer highly desired ‘real university experience’. The students will work in small groups to design and deliver projects around immune myths they have come across and try out the real immune health tests and techniques used by researchers.
  • A literature, media and public research project. The students will collect data on perceptions about immune health versus published findings. For example; interviewing friends and family, auditing adverts and products in shops and studying research papers. This independent study will be supported though our online learning platform CANVAS and through giving students access to the University Library for the duration of the project.
  • Mentoring by medical students who have already undertaken their immunology module. This provides a unique opportunity for medical students to develop important teaching, mentoring and engagement activities and was seen as highly valuable by the focus group.
  • Conference poster creation and presentation. All students will be invited to present their projects at the Immune Health Gala in the Library of Birminghamlinked to the prestigious ESID 2020 conference. Students will also have the opportunity to attend conference sessions and present their projects to and interact with a panel of immunology experts. All school cohorts from which our students will be selected will also be invited to the Gala and students will also be encouraged to invite others so their work can be presented to friends, family, teachers and school colleagues in addition to the wider public and conference attendees (including top clinicians in the field, a prospect that our focus group found very valuable).

Importance and Expected Impact

Approaching the problem of immune health misinformation through public engagement represents a novel and innovative approach. However, it is one that we feel will be successful and impactful, given the wide interest in immunity and the persistent myths and confusion that abound. In summary, our project will

  • Empower the general public to challenge claims about immune health in their everyday lives using evidence and research and to seek advice from a medical professional where they believe they may have a problem with their immune system.
  • Support patients to have their voices heard by healthcare professionals and the general public about their experiences of immunodeficiency, which they may not have felt empowered to do previously due to the complex and poorly understood nature of this diseases.
  • Increase confidence in A-level and medical students, especially those from widening participation backgrounds who face more competition than their peers to gain entrance to medical school and the best careers in medicine, to pursue studies and careers in immunology and immunodeficiency research careers.
  • Create a lasting effect on the students involved, whether or not they continue into medicine and/or immunology in talking to others, within and outside of their studies and careers, about immunology research.
  • Create lasting networks amongst immunodeficiency researchers, the public and patients and build a legacy of engaged immunodeficiency research at the University of Birmingham and beyond.

Beyond this initial project, we also hope to build our work in this area further. Using this work as a basis to translate public engagement around immunity more broadly within the UK and beyond. Although SID incidence is increasing rapidly in the UK, mainly due to issues that are more prevalent in developed countries, such as cancer treatments and ageing, immunodeficiencies are also responsible for a massive burden in the developing world. For example, the biggest global cause of SID, protein-calorie malnutrition, can affect up to 50% of people in some communities [5] and it is estimated that there are 6 million people with PIDs worldwide, of which 70-90% are undiagnosed [6].  

The Team

The team brings together a unique collaboration of patients, clinical immunologists, academics and public engagement professionals to deliver a meaningful engagement project for the first time on this scale for immunodeficiency. Birmingham is a key geographical area for primary and secondary immunodeficiency; it has a diverse ethnic population, hosts a centre for rare diseases and is a major clinical and research centre for other rare, immune related diseases through Birmingham Health Partners (University of Birmingham, Birmingham Women’s and Children’s Foundation Trust and University Hospitals Birmingham Foundation Trust). The University of Birmingham is 3 miles away from the ICC where ESID 2020 is due to take place and has a committed public engagement strategy supported by Wellcome Trust ISSF funding, which this project aligns closely with in promoting culture change and capacity building in public engagement at the University of Birmingham. The University of Birmingham Outreach Team will also be closely supporting this project by a) training medical students to work with our students (including child protection), b) offering their expertise and networks, which reach over 200 Birmingham schools, during the recruitment of and liaison with students, including set-up and oversight of student access to CANVAS and Library Services.

Dr Richter is a clinical Immunologist and Senior Lecturer. Experience of meaningful public engagement includes a widely cited national survey of allergy in British Bee Keeper, chairing the UoB anaphylaxis UK patient group which facilitates medical students’ training schools and clubs in anaphylaxis management and speaking at regional patient days, hospital members’ forums and GP educational events. She also contributes regularly to patient engagement days. She has a wide portfolio of teaching activities including being module and programme lead and developing an extensive range of immunology and immunodeficiency educational material. Through PIDUK she promotes patient advocacy and experience in medical school education inviting patients to deliver lectures on their experience of immunodeficiency and also the role of patient groups in rare disease.

Dr Huissoon is a clinical Immunologist and chair of the ESID local organising committee. He led the successful bid for ESID 2020 meeting in Birmingham, with increasing public awareness of Immunodeficiency as a key component of the bid. He has supported patient voice as chair of the medical advisory panel of the Primary Immunodeficiency Association patient support group 2008-2013 and developed bi-annual regional immunodeficiency patient awareness and engagement events 2008 to date. He has undertaken school engagement through the “BloodLabs” pathology in schools project: where he designed and delivered this large interactive event for year 8 at Ninestyles School in September 2015 and undertook public engagement training through RCPath/Science Museum in 2014. He has undertaken regional television and radio appearances, including an annual radio phone-in slot with Ed Doolan. He has hosted public seminars on allergy and is a Sense About Science member and contributor. He also represented the Allergy Garden for the Royal College of Pathologists at the Chelsea Flower Show, 2017, where he discussed allergy (and plants) with visitors.

Dr Susan Walsh is the director of the patient network, PID UK, whose mission is to support and represent people affected by PID in the UK by working with healthcare professionals and other relevant organisations to improve their care and quality of life. PID UK will bring experience in clear written information for patients and communicating this through a variety of media. They have existing experience of raising awareness and understanding of immunodeficiency within the medical profession, lobbying for improved patient care and promoting research into immunodeficiency.

Dr Fitzsimmons is a public engagement professional at the University of Birmingham with extensive experience in managing engagement projects, particularly in infectious disease, cancer and immunology as well as a proven track record in digital and print communications strategies. She is also an Ask For Evidence ambassador for Sense About Science and will oversee this part of the project.  

Dr Sian Faustini is a post-doctoral student who has undertaken her PhD in Immunology and also has expertise in post graduate immunology teaching.  She has won British Society of Immunology and UoB funding to undertake a schools PER project called ‘Preventing plagues’ and will use this experience to inform the schools research project in this grant.

Project Delivery

Steering Group: Strategic oversight of the project and timeliness will be coordinated through the steering group delivered by the PI Dr Richter (0.1 FTE), Project Coordinator (Dr Faustini, 0.6 FTE), Dr Huissoon, the chair of the ESID 2020 local organising committee, Dr Susan Walsh on behalf of PID UK, and Dr Fitzsimmons (0.1 FTE).

Delivery of the work-packages will be organised as follows:

Public Engagement Gala and tour: Gala will be delivered by the above team in conjunction with other UK and European Immunologists, researchers and medical students who will be trained by Dr Richter, Dr Faustini and Dr Fitzsimmons.  

Schools Research Taster: The Schools work-package will be delivered by Dr Richter and Dr Faustini. This work will be supported by the UoB Outreach Team who have already been consulted on feasibility and willingness to contact the widening participation schools that UoB collaborates with. UoB Medical Students will also be involved in mentoring our students.

Risk management: the project includes a number of vulnerable individuals including children and patients with chronic disease. This project has been developed in conjunction with the UoB Ethics and Governance Department to ensure all aspects of the project are safely delivered. Considerations have included the ethics of undertaking research projects with minors and the appropriate DBS checks required and consideration of the human tissue act for the schools research project.

Recruitment for the student project is likely to be over-subscribed. Our work with the UoB Outreach Team and Y12 students has suggested that there is huge demand for University access sessions that are provided on campus, particularly where these are hands-on laboratory projects and having the unique opportunity of presenting work to leading immunologists. Students will be asked to apply for this project by submitting an application form in the December prior to the project beginning as this is when they apply for other widening participation schemes. We will then work with the UoB Outreach team to assess and select applicants who are likely to benefit and bearing in mind any other schemes they have applied for. We will not select based on pre-existing interest in immunology/ immunodeficiency as we would like to assess the impact of the activity on those who would not have considered immunology for further study or careers. However, those who happen to have an existing interest will not be excluded, instead we recruit regardless of level of interest and assess and compare interest pairwise between the baseline and at the end of the project.  

Evaluation

We will gather evidence and evaluate our work in order to determine our success against our outcomes for all three work-packages. We will use a range of quantitative and qualitative methods in each case and seek external guidance from The Audience Agency on our plans before any evidence is collected. In each case we will formulate a baseline and then assess each groups’ response both immediately after the relevant and at the very end of the project in order to assess longer-term impacts of participation. We also hope to continue this work beyond this project to assess effects on diagnosis rates and uptake of immunology study, for example.

Our evaluation plans for each work-package are outlined below:

Effects on publics and patients

  • PID UK patient survey to assess average times and path to diagnosis
  • Collection of patient testimonials and stories analysed for themes and used to create testimonial videos and posters and ‘pill box patient’ talks
  • Footfall counts for those who attend and those who take part in different activities
  • The Myth-Buster Pop-Up shop will have integrated evaluation e.g. for each item visitors will guess whether it has any effect on immune health before revealing the evidence behind the claims
  • Interactive quizzes and games to determine underlying knowledge, beliefs and interest in immune health. Carried out in Library of Birmingham and GP surgeries in the lead-up to the event to help shape work on ‘pop-up’ shop and other activities during the Gala and to inform interaction with the public going forward
  • Post-activity responses collected during Gala through collection of vox-pops, games, and questionnaires carried out by medical student volunteers and Public Engagement Team
  • For all evaluation respondents will be stratified into groups including patients, friends and family of students, clinicians etc
  • Responses to Ask For Evidence call outs before and after main event for submissions of claims related to immune health (before) and any stories of challenging immune claims afterwards as well as looking at page views etc for related wed content on the Ask For Evidence website
  • Social media analysis and web traffic / downloads analysis
  • Contact cards with details of web contact form given out to all participants to let us know of any longer-term outcomes (e.g. the experience leading people to look for evidence behind immune claims or booking a GP appointment for a possible immune problem). Not likely to yield a large number of responses, but any received would be very informative
  • Specific questions to be added to conference post-event survey to assess value of project to clinicians and patients attending for the conference
  • Media coverage

Effects on students

  • All participating students will be asked to fill out questionnaires to assess their interest and understanding of immunodeficiency research before, immediately after and several months after the project. This will measure a) confidence and experiencing in discussing immune health with others (e.g. family), b) specific learning about immunodeficiency, c) likelihood to study or consider a career in immunology d) applications and outcomes to higher education (collected with Outreach Team to avoid overlap)
  • Participating medical students will be surveyed to see whether they might be more likely to specialise in immunology as well as to collect feedback about impact of being involved

Detailed Budget

Total expected cost: £103,394    Total requested funds: £58,437

Key Findings from Student Focus Group

We undertook a focus group with Year 12 students from across Birmingham and the West Midlands on 4th September 2018. All were hoping to apply to study Medicine and had heard of Immunology.  When asked out of 10 how confident students were in describing Immunology as a subject they averaged 5.8/10 with 10 being most confident. They felt the subject was quite difficult scoring 7.3 on average out of 10 with 10 being the most difficult subject. This triangulates with previously published work. Students were keen to gain a wide spectrum of experience; trying laboratory work, being mentored by medical students, attending the University campus and the ESID 2020 conference more considered most desirable. Overall they felt the project offered a very valuable experience (8.7/10) and 100% of students felt they had learned something from the focus group and were more aware about Immunology.

Following the focus group, we expanded the laboratory element of the project and optimised the medical student contribution. The timing of the project was proposed to interrupt least with school commitments. This work also highlighted the extra considerations that need to be made for widening participation students such as organising or paying for transport and careful balancing of timings to avoid overlap with other commitments such as part-time jobs. All of the students also commented that they felt that this project represented an extremely valuable and unique opportunity compared to other opportunities they were aware of because of the autonomy given to do their own research and frame their own questions.

References

  1. Shillitoe et al, The United Kingdom Primary Immune Deficiency (UKPID) registry 2012 to 2017. Clin Exp. Immunol (2018)
    1. Wood, P. Primary antibody deficiencies: recognition, clinical diagnosis and referral of patients. Clinical Medicine. 2009; 9(6);595-599.
    2. Collated data from digital.nhs.uk, accessed on 11th September 2018
    3. Data from the Association of Leading Visitor Attractions, accessed on 11th September 2018
    4. Chinen, J et al. 2009 The Journal of Allergy and Clinical Immunology 125 S195-S203
    5. McCusker and Warrington, 2011, Allergy, Asthma & Clinical Immunology  7  511