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Patient and Public Involvement and Engagement: NIHR Blood and Transplant Research Units Annual Reports
2016/17
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Contents
Background ........................................................................................................................... 3
Blood and Transplant Research Unit in Donor Health and Genomics at University of
Cambridge ............................................................................................................................. 5
Blood and Transplant Research Unit in Stem Cells and Immunotherapies at University
College London ..................................................................................................................... 8
Blood and Transplant Research Unit in Organ Donation and Transplantation at University of
Cambridge ............................................................................................................................10
Blood and Transplant Research Unit in Red Blood Cell Products at University of Bristol ......13
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Background
All recipients of National Institute for Health Research (NIHR) Blood and Transplant
Research Units (BTRU) funding provide the NIHR with an annual report detailing the activity
and progress made in the previous financial year. Annual reports provide valuable
information that allows the NIHR to review performance, enable decision making on future
funding requirements, answer Parliamentary Questions, prepare briefings for Ministers,
respond to other requests for information, and share information amongst the NIHR
Coordinating Centres.
There is a patient and public involvement and engagement (PPI/E) section in the annual
report that requests the following information, in no more than two pages:
Public involvement and public engagement, reporting on the following areas:
Any significant changes or revisions to your PPIE strategy. Progress made in the delivery of your aims and objectives as detailed in your
strategy. What activities and outcomes are you delivering? What partnerships and collaborations are you involved in? What resources are you deploying? How is monitoring and reviewing of progress linked into the reporting and governance structures of the BTRU?
Examples of the impact that your PPIE activities are having. This could be in individual research projects and / or across research areas and / or in the governance and management structures of the BTRU itself. Please highlight any significant successes or challenges. Any PPIE ‘Added Value’ case studies are welcome.
Please also describe how you make patients and the public aware of the research being undertaken within your BTRU, and signpost them towards appropriate information about participating in research.
Each year, the NIHR makes the PPI/E sections of annual reports publicly available. All the reports in this series, both current and previous, can be downloaded from the NIHR website: www.nihr.ac.uk/ccf-ppie-reports.
Blood and Transplant Research Units (BTRUs)
The four BTRUs were established in October 2015 and are a partnership between
universities and NHS Blood and Transplant (NHS BT). The BTRUs support the needs of
NHS BT for research to improve the supply of blood, blood products, stem cells and tissues,
and organs for transplantation by:
Creating an environment where world-class research, focused on the needs of NHS BT
and the patients it serves, can thrive;
Translating advances in research into benefits for users of NHS BT’s services;
Focusing on areas of greatest priority; and
Providing high quality research evidence to inform decision making by NHS BT.
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The BTRUs conduct research in four areas: donor health and genomics, organ donation and
transplantation, stem cells and immunotherapies, and red blood cell products. These areas
align to aspects of NHS BT’s research strategy. Each BTRU has a substantial portfolio of
world class research. For more information about BTRUs: click here.
Purpose of this report
This report briefly summarises the PPI/E activities undertaken by BTRUs during 2016/17 in
delivery of their PPI/E strategies. Following the submission of annual reports, all the PPI/E
sections were compiled in a draft document that was shared with the BTRUs. This provided
an opportunity to review and edit content; to add any necessary information about context, to
explain abbreviations and acronyms and provide contact and website details.
The main aim of making this information publicly available is to support and promote the
sharing of knowledge, learning and good practice across the NIHR and beyond. In addition,
this report, along with others in the same series, begins to address Recommendation 9 of the
Going the Extra Mile Report which followed a strategic review of public involvement in the
NIHR:
Recommendation 9 – Coordination: All NIHR Coordinating Centres and infrastructure
organisations should have a strategy, framework or plan that covers the promotion
and advancement of public involvement, participation and engagement in research.
Leadership, accountability and funding for this agenda within organisations must be
clear and transparent. Progress should be reported annually, made publicly available
and an overview included in the NIHR’s annual report.
‘Going the extra mile’: Improving the nation’s health and wellbeing through public
involvement in research’ (2015)
We believe this working document will be of interest and practical use to a number of
different audiences including: all those who have responsibility for developing and delivering
PPI/E strategies across the NIHR, the public, patients, service users and carers,
researchers, research funders, all NHS organisations, Public Health England, industry and
third sector organisations.
Further information and feedback
If you would like to know more about any of the specific PPI/E activities of the BTRUs please
contact them directly.
The NIHR Central Commissioning Facility has produced this report and we welcome
feedback from anyone who reads it. For example, it would be helpful to us to know who
reads this report, whether readers find it informative and useful, or not and what we can do to
improve it. To give your feedback, please email [email protected] using the subject header
‘BTRU PPI feedback.’
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Blood and Transplant Research Unit in Donor Health and Genomics at University of
Cambridge
Annual Report 2016/17: Patient and Public Involvement and Engagement (PPIE)
Website http://donorhealth-btru.nihr.ac.uk/
PPIE web pages http://donorhealth-btru.nihr.ac.uk/involved.html
PPIE Strategy http://donorhealth-btru.nihr.ac.uk/involved.html
Contact Name Dr Emanuele Di Angelantonio
Contact Email [email protected]
Contact Phone 01223 748622
Patient and public involvement: Our strategy is aligned with, and is part of a wider effort by NHSBT and the BTRUs as a collective, and will be subject to periodic review to ensure it evolves/adapts to meet the needs of our research and those of the blood service. We have actively engaged with other BTRUs to share best practice and ideas. Our strategy involves different key aspects: To involve donors, the public and other key stakeholders in the design, management and
reporting of our research from the initial concept through to implementation and dissemination.
To establish a comprehensive process to support and encourage the involvement of
blood donors, the public and relevant stakeholders to participate in discussions shaping the research that is conducted by our BTRU.
To optimise the alignment of our research with the needs of donors, the public and
NHSBT. To create a culture where social and ethical issues are fundamental to informing research
decisions. To actively engage the public to increase understanding of, and interest in, medical
research and research techniques. As described below in the Organisation Chart, our plan was to establish an Advisory Committee (AC) with a membership of up to 9 lay representatives, and Advisory Group (AG) that comprises a wider contact list of donors who, although not expected to participate in live meetings, are willing to be consulted electronically on research plans. PPI/E strategy Organisation Chart:
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Between September and October 2016 we held two one-day information and recruitment events inviting ~60 participants who had registered an interest via the website. Following these events, the BTRU hosted ~30 participants for a half-day introduction to the BTRU research and donors’ involvement plans. This was also an opportunity for donors to meet and discuss research with key members of the BTRU. Following these series of events, 9 donors were invited to join the AC. Members of the AC attend face-to-face meetings and help ensure that our research processes are acceptable and transparent. The Unit’s meetings include: Research Theme Meetings: comprising: senior academic staff, researchers, and PhD
students. Management Committee: comprising all the Unit’s senior scientists plus members of the
NHSBT senior management team. High-level scientific decisions will be made by this group.
Steering Committee: comprising the senior scientific coordinator, senior academic staff,
NHSBT personnel integral to operationalising clinical trials and one lay representative. Furthermore, we are working together with the members of the AC on ways to increase the contribution of donors to the BRTU activities by developing learning and development opportunities. For example: We have organised face-to-face meeting with PI’s and visit to research facilities (such as
visit to the Sanger Welcome Trust). We have allocated a “science partner” for each member for all meetings for pre and or
post meeting discussion and content review. We are integrating lay representative participation into early development of new studies
such as for the Fainting Prevention Trial Study. Our Advisory Group (AG) currently comprises 88 members, all of which registered via our Get Involved campaign. The AG functions on a remote (correspondence only) basis. Members of the group review protocols and ethics applications, participate in the development of participant information and consent forms, and advise on the development of a participant recruitment strategy. They also help us develop lay summaries of the findings and disseminate research outcomes to appropriate patient groups. The AG also contributes to qualitative work and the development of research instruments, for example interview schedules and questionnaires. Members of the group will also be invited to support the
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analysis of qualitative data and will be the primary conduit through which public experiences of clinical and research domains are fed back, to promote empowerment of the public in playing a part in driving change through research. We are currently looking at ways to develop our engagement with the Advisory Group further and to support this we will be hosting a PPI/E day incorporating updates and workshops to generate further feedback and greater understanding and participation. Agenda items will include feedback on participation of our lay members to date, development of future actives and ways to integrate PPI further into our activities. Public engagement: Further public engagement activities form part of the long-term plan by seeking to engage with a wider public cohort: We will achieve this by utilising activities such as the “Cambridge Science Festival” (http://www.sciencefestival.cam.ac.uk/) and “Pint of Science” (https://pintofscience.co.uk/about/) where we plan to host events. In addition to utilising the accounts of NHSBT and NIHR, we recently opened a Unit Twitter account to publicise our activities, BTRU Seminars, publications and other related BTRU matters, and are currently exploring ways of reaching a broader audience (beyond that of our registered members). The BTRU seminar series is widely advertised across the four BTRUs via the PPI leads. We have hosted 12 seminars with guest speakers from UK, Europe and USA and have future dates and speakers confirmed until February 2018. Our website advertises the work and objectives of our Unit as well as upcoming events. Our website receives good traffic with 2644 hits in the last 12 months, 1979 new visitors and 665 repeat visitors. The new more interactive web site is due for launch at the end of July. The 2nd European Conference on Donor Health Management was held on 13-15 July 2016. Co-organised by the Deputy Director of the BTRU, Dr Emanuele Di Angelantonio, and hosted by the University of Cambridge, the programme covered the latest developments in science, policy and experiences in the field of donor health & management. It covered three main themes (over 10 sessions): Genetic/Biomarker, Behavioural, Outcome/ Risk and includes eminent speakers from Europe and North America. Members of our BTRU are also involved in organising the 3rd European Conference on Donor Health Management that will be hosted in Denmark in 2018. Public participation: We continue to run our poster and leaflet campaign “Get Involved” in six static donor sites including Cambridge, London and Birmingham, which highlights our PPI/E opportunities and links directly to our web site. The public can also review the BTRU, its individual themes and other related studies, seminars, publications and can submit a request to join our Advisory Group and Committee via the website. Finally we have developed a process to disseminate publications not only to all key stakeholders across the NHSBT, NIHR and BTRUs and will be utilising our social media, and the general media support provided by the University of Cambridge, to disseminate more widely to the public.
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Blood and Transplant Research Unit in Stem Cells and Immunotherapies at University
College London
Annual Report 2016/17:
Patient and Public Involvement and Engagement (PPIE)
Website www.ucl.ac.uk/cancer/research/research-centres/btru
PPIE web pages http://www.ucl.ac.uk/cancer/research/research-centres/btru/patient-public-involvement
PPIE Strategy In revision
Contact Name Martin Anyim (Acting PPIE Lead)
Contact Email [email protected]
Contact Phone 0207 679 8128
There have been a number of meetings and discussions regarding Patient and Public Involvement and Engagement (PPIE) strategy within the BTRU. A revised strategy document was generated, but felt to inadequately address the needs of the NIHR. It was clear that there was insufficient resource/time allocated within the original BTRU budget to address this area. As a result, the need for a dedicated PPIE Lead for the UCL NIHR BTRU has been identified and approved by the NIHR Programme Manager. The post will be for 3 days a week and will cover all aspects associated with PPIE. The Translational Research Manager associated with the Unit has held discussions with Simon Denegri, the NIHR National Director for Patients and the Public in Research to discuss the requirements and seek assistance with the task of identifying a suitable individual for the role. A job description and role requirements are currently being drafted, with the aim of advertising for the post in November 2017. In preparation for future engagements with the public, Amy Webster (Research Associate in Theme 1) is organising and attending a public engagement training workshop for early career researchers at UCL. This will allow her and others to find out about resources available at UCL to support the organisation of public engagement events and to learn about the best strategies to organise successful public engagement events. In the interim, progress has been made with respect to the original plan and outline in the last project report. A website has been crafted linking to the UCL Cancer Institute, and is currently being refined to link to the web pages of the principal investigator groups. This has been designed to enable both PPE, and via contact details to allow for PPI.
Patient and public involvement: The main area of PPI to date has been through input into the drafting of the Chimeric Antigen Receptor Donor Lymphocyte Infusions (CARD) study documents. After earlier discussions with the UCL Hospitals Biomedical Research Centre (UCLH BRC) Cancer Theme lay panel, it was concluded that we needed to seek input from a lay member with more direct/specialist insight. A patient who has had an allogeneic transplant for Hodgkin Lymphoma was happy to provide this input. Both she and other members of the lay panel made helpful comments with respect to patient information materials that were incorporated into the final documents. We have subsequently been able to make use of the same PPI axis for a clinical trial of Chimeric Antigen Receptors Therapy (CAR T) in adult Acute Lymphocytic Leukaemia CAR (ALLCAR19) that is funded by an NIHR i4i grant, and that will open shortly at UCLH. This provides evidence that work done through the BTRU, in collaboration with existing BRC structures, is allowing broader PPI input into our clinical trial programme. The same axis has influenced the direction of a new CAR T cell preclinical programme targeting CD30 and the tumour microenvironment to develop a cell therapy for Hodgkin Lymphoma (successfully funding a Cancer Research UK clinical fellow/PhD).
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Public engagement: A number of public events have allowed us to engage and inform various sectors of the public. General public: - UCLH Research Open Day (28.06.16): an annual event showcasing important research across medical specialities; we hosted a stand focused on cellular immunotherapies, drawing attention to the work of the unit by covering the pre-clinical and clinical angles relating to CAR T-cells. We used colourful, layperson friendly posters and video footage of CAR T-cells in action and patient stories/media coverage of CAR T-cell therapies for cancer. - OVPD and UCL Cancer Institute Lates Event (28.02.2017): the event was a ‘themed journey’ through cancer hosted in different areas of the UCL Cancer Institute, from diagnosis, prognosis, current treatment options, sequencing and novel therapies. We had a stand covering novel immunotherapies with a focus on CAR T-cell therapies
- UCLH Research Open day (04.07.17): due to the success of our stand in 2016, we have become the ‘face’ of the 2017 annual event, with our stand “Driving CAR T-cells to win’. Allied professionals: - Lymphoma Association event at BSH/ISH Glasgow (04.2016) ‘The future of immunotherapy in lymphoma’ - ESH/EBMT training course. Budapest, Hungary (05.2016) ‘Chimeric antigen receptor therapy’ - BONUS (British Oncology Network of Undergraduate Societies) educational day (02.2017) 'Immunotherapy Comes of Age' – audience of 50 undergraduate students from around the country
- EBMT, Marseille, France (03.2017) ‘CAR T cells: expanding access beyond single institutions’ – satellite symposium with specific focus on automated manufacture and the CARD study
Describe how you make patients and the public aware of the research: Website (as
above); one of our patients is a documentary producer for the BBC and wants to make a
programme on the new immunotherapy approaches for Chronic Lymphocytic Leukaemia
(CLL). All manuscripts will be published under open access, meaning the publication and
associated data will be available to the public. Following publication of the Epimatch
research, Amy Webster will also publish a lay summary of the research in her blog, which
focuses on personalised medicine and epigenetics.
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Blood and Transplant Research Unit in Organ Donation and Transplantation at
University of Cambridge
Annual Report 2016/17: Patient and Public Involvement and Engagement (PPIE)
Website http://odt.btru.nihr.ac.uk/
PPIE web pages http://odt.btru.nihr.ac.uk/get-involved/
PPIE Strategy http://odt.btru.nihr.ac.uk/get-involved/our-strategy/
Contact Name Dr Lynne Stobbart
Contact Email [email protected]
Contact Phone 0191 208 5513
Patient and public involvement: We have established a Patient and Public (P&P) Research Panel of 30 members. Via email, on-line surveys and face-to-face meetings, these individuals have: Contributed to development of publicity materials, including flyers, postcards, posters and
banners, designed to raise awareness and facilitate further recruitment of interested parties.
Participated in a training/support needs assessment exercise (in conjunction with a broader PPI/E initiative co-ordinated by EngageFMS at Newcastle University). This has informed development of a training/support programme that will be accessible to panel members and the broader community.
Attended face-to-face sub-group meetings and also provided feedback via email, contributing to development and refinement of funding applications for perfusion studies led by Mr Colin Wilson (submitted to NIHR Efficacy Mechanism Evaluation: decision pending) and Dr Emily Thompson (submitted to the Wellcome Trust: not funded).
Responded to an invitation to sit on a Management Group for the Transplantation Biobank, co-ordinated by Ms Lucy Bates. [Membership and process to be agreed.]
Voted on a collection of two minute videos produced by four of the research themes. The videos aimed to provide an informative patient and public friendly showcase for the work of the themes. Panel members were asked to vote on the videos’ understandability, effectiveness in delivering learning, ability to hold their interest, and audiovisual quality. As well as the Likert scale responses, some respondents also provided informative narrative feedback. All feedback will be used as a learning tool to enhance the development of similar materials in the future. The competition was won by the video produced by BTRU in ODT Theme 4. All of the videos have been posted on the BTRU website (http://odt.btru.nihr.ac.uk/get-involved/research-action-videos/) and will also be made available on transplant.tv.
Attended Management Group Meetings (September 2016 and September 2017) either for the whole event or in conjunction with a parallel Patient and Public Involvement Induction Session. On both occasions, by participating in different ways, panel members were able to offer useful feedback on the areas discussed and also on how they thought patients and the public could best be involved at this level. Patient and public members of the Management Group have also contributed to this discussion, during their attendance at the Management and Progress Update Meeting in Cambridge in March 2017. For future meetings, they have requested a glossary of biomedical, technical and organisational terms, alongside a brief lay summary of presentations/themes. They emphasised that P&P members need to know whether and how their presence/input has been useful and noted the importance of feedback, both from patient and public contributors, with specific questions on what they expected and achieved from the meeting(s), and from researchers, with regard to the value and impact of patient and public contributions.
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In order to manage requests for patient and public input in individual research projects within the themes, we have developed documentation that will focus requests and provide structure for reviews and participation. The documentation will also facilitate assessment of impact, thus facilitating an audit trail, providing learning and contributing to further development of procedures and processes. These documents include: Request (advertisement) for non-clinical research advisor Theme Lead/Principal Investigator PPI requirements Patient and Public Research Panel feedback and evaluation Public engagement: A range of events involving patients and members of the public have taken place over the last 12 months, including: Patient and Public Awareness Raising Event: this half-day event took place at the
Institute of Transplantation at Freeman Hospital, Newcastle, in June 2016. Over 30 delegates attended to learn about the aims of the BTRU generally and, more specifically, how they can become involved in our Patient and Public Research Panel and contribute to our research. Speakers included researchers from some of the BTRU’s themes as well as individuals who are already involved in, or have benefited from, patient and public activities supporting research. The event provided an opportunity to liaise more closely with patient and public groups including, Freeman Heart & Lung Transplant Association, LIVErNORTH, North Tyneside Kidney Patient Association, Advocacy Centre North (NCVS) and VoiceNorth. The session prompted lively discussion and contributed to the registration of 22 individuals wishing to become members of our Patient and Public Research Panel.
Cambridge Science Festival: Professor Mike Nicholson, Dr Patrick Trotter and Dr Sarah Hosgood delivered a public lecture at the 2017 festival: ‘Better organs, better outcomes: what are the current goals for research in organ donation and transplantation?’. The lecture was very well attended and feedback from the session was very positive, with 100% of respondents rating the event good or very good and giving a score of 9/10 with regard to what they had learned at the session. Attendees described the event as “Absolutely stunning! Really interesting talks…”, “…picked up lots of info to introduce into my teaching” and “Very interesting and well delivered presentations […] inspiring to learn from experts.”
Wet lab open days for Kidney Research UK staff, patients and the public (Oct and Nov 2016, Feb 2017). These events, organised by Professor Mike Nicholson and Dr Sarah Hosgood, are always well received and further sessions have been requested.
‘Elevator pitch’ event at the BTRU trainees’ research afternoon (March 2017) where trainees delivered a brief presentation showcasing their research to a panel of lay members. They received feedback on clarity and effectiveness in communicating the nature of their work and reported that they found this exercise useful.
Future plans for PPI/E events: Follow-on engagement and awareness raising event to be held in Newcastle. The event
will be designed around an interactive ‘drop-in’ style format with panel discussions and audience participation focusing on individual organs. .
Following a successful collaborative BTRU Trainees’ Day, the possibility of collaborating with either the BTRU in Donor Health and Genomics or with all four BTRUs is being considered, with a view to holding a joint PPI/E event to facilitate sharing of learning and best practice. These ideas will be explored further in the coming months.
We are also seeking to engage more regularly and effectively via digital means, both via our dedicated website (http://odt.btru.nihr.ac.uk/) and our recently created Twitter account (@BTRU_ODT ). Currently, the Twitter account is being administered by Dr Stobbart, but this is something that could be taken over by our Patient and Public Research Panel members.
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Publicity materials The publicity materials noted above are currently being distributed in workplaces and in a number of publicly accessible areas. As most of our panel volunteers to date are patients or carers we are endeavouring to broaden our demographic by placing these materials in areas more likely to capture younger individuals of working age and across varying backgrounds and ethnicities. Broadening engagement. We are in discussion with Northumbria University’s Faculty of Health and Life Sciences in an effort to engage future professionals, either as Patient and Public Research Panel members or to consider utilising the group in their own healthcare research. We are also liaising with Northumbria University School of Design in order to explore new and novel approaches to patient and public engagement and involvement via a range of different media and a more interactional approach. Public participation: As noted above we continue to promote participation through links with our patient
associations, contributions to public lectures and events, transplant television, and print,
television and digital media, including our dedicated website (http://odt.btru.nihr.ac.uk/). As
yet we have not introduced new recruitment pathways for patient or public participation in
ongoing or forthcoming research protocols. As our Patient and Public Research Panel grows
and its remit broadens we expect that panel members may become involved in publicising
new studies taking place at one or both research sites. Close communication with relevant
patient and public groups will also facilitate recruitment.
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Blood and Transplant Research Unit in Red Blood Cell Products at University of
Bristol
Annual Report 2016/17: Patient and Public Involvement and Engagement (PPIE)
Website http://www.bristol.ac.uk/btru/
PPIE web pages http://www.bristol.ac.uk/btru/work/public-patient/
PPIE Strategy
Contact Name Andy Gibson
Contact Email [email protected]
Contact Phone 07941344653
Patient and public involvement (PPIE):
Key areas for early PPI activity identified in our PPI strategy were involvement in: I. the running of the clinical trial of laboratory grown red blood cells, II. the qualitative research being led by Professor Julie Kent III. the development of the BTRU’s website.
RESTORE-i feasibility study
This is an initial feasibility study to establish a panel of blood group compatible healthy volunteers, potential ‘recipients’ and blood donors who may be selected to be invited to take part in a later RESTORE clinical trial (for more information on the trial see http://www.bristol.ac.uk/btru/work/trial/) The information sheets and consent forms for this study were reviewed by members of our Public Advisory Group (PAG). Some of the sentences included in the information sheets were standard wording included in the Ethics Committee template. However, within these confines the information sheets and consent forms were reworded to address concerns raised by PAG members. The PAG suggested that a diagram of the stages of the research process be included in the documentation to help make the procedure clearer for potential participants. These documents were subsequently submitted to the Ethics Committee and approved for use. The researchers involved in the ethics submission stated that the changes made to the documentation helped to make them clearer and contributed to the favourable decision arrived at by the ethics committee.
Qualitative Study into public attitudes to cultured red blood cells
I. Ethics application PAG members reviewed the interview schedules, information and consent forms for this project. They suggested amendments designed to clarify and simplify the language used, for example explaining what is meant by ‘data stored in the university repository’ or removing terms such as, ‘anonymised verbatim’. These amendments contributed to the clarity of the documents and interview schedules.
II. Discussion of findings from the focus group Extracts of a transcript from a focus group held with blood donors, were shared with members of the group. The researcher who carried out the interviews also presented findings from the qualitative research more generally. The purpose of the discussion was to allow PAG members to articulate their perspective on the findings of this work. The researcher conducting this work fed back, after the event, that the input from the PAG gave her new and interesting areas to think about in analysing the data. These included:
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1. Highlighting how the focus group revealed peoples’ lack of knowledge and misunderstandings about the type of research carried out by the BTRU.
2. Pointing out that in communicating this work to the public, the description of the research needs to be very carefully worded and thought through to address public knowledge gaps.
3. Emphasising the need for good clear information, demystifying, at all levels (documents and orally) the research, highlighting the ethical issues and the importance of cRBCs.
4. Adding another analytical theme to the analysis to address public understanding/knowledge deficits.
5. Highlighting perceived potential ethical issues, e.g. the potential to create cell lines from certain rare blood types.
7. Asking the question ‘who will eventually own/control the process and would possibly financially benefit from the cRBCs in the end once enough cells can be made?’ In particular, PAG members highlighted that people ‘trust’ the NHS and NHSBT.
As a result of this input a new section was added to the final report on the qualitative research. This section focussed on the need to develop good engagement and communications with the public about the research carried out by the BTRU.
Website development
PAG members have also been involved in reviewing the content of the BTRU website. PAG members fed back to the BTRU via the management committee that they liked the look of the site, i.e. the clean and simple design, layout and use of images, clear text and a prominent position for Patient and Public Involvement. PAG members also liked the fact that the site is easily navigable, with most information accessible with two or three clicks from the homepage. Several suggestions were made for improvements as follows: PAG members thought that the qualitative research should be separated from the PPI
section to avoid confusing the two. Suggesting edits to text to promote the use of plain English.
Suggesting how the relationship between different ‘parallel research’ streams could be more clearly expressed.
The above recommendations have been acted on and appropriate revisions have been made to the website. BTRU Management Committee attendance
PAG members have attended management committee meetings and have made active contributions. Attendance at these meetings has given new insights into the research being carried out by the BTRU. They have kept notes of these meetings which will be valuable in helping us to develop our public engagement activities. Trial Steering Committee
Two public contributors are also members of the clinical trial steering committee for the RESTORE clinical trial. Public engagement (PE): The BTRU website was built with input from the PAG http://www.bristol.ac.uk/btru/ and is now public facing. Dr Toye repeated a PE exercise in collaboration with BrisSynBio Centre held in Bristol, 21 Nov 2016. This was a public question and answer panel on growing red blood cells and the application of synthetic biology on “Plants, Microbes and people”. The Unit has also had multiple visits from media companies; leading to appearance of Prof. Anstee, the director of the BTRU, in an ECO media/ART program on artificial blood screened in France and Germany, and in a BBC World News Horizons Programme in Nov 2016
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(“People in a Petri”). Dr Toye and members of the team appeared in the “Operation Ouch!” Children’s BBC programme Series 5 Episode 6 (the “Operation Ouch!” episode was available on BBC iPlayer for 3 months and has since been repeated on Children’s BBC twice and has been shown in Australia). An interview with Dr Toye contributed to an article on the Microsoft NBC news website that was picked up by other news sites: “The long quest to create artificial blood may soon be over” (https://www.nbcnews.com/mach/science/long-quest-create-artificial-blood-may-soon-be-over-n708576). The Nature Communications publication generated huge interest (over 15,000 reads) with a large media following including print and 70 online articles, as recorded on the Nature website (see https://www.nature.com/articles/ncomms14750/metrics). Prof.Kent and Dr Toye were awarded a Brigstow Institute (http://www.bristol.ac.uk/brigstow/) grant for an artist in residence (Katy Conor). Katy has created a blog record of her experience in the laboratory (https://katyconnor.wordpress.com/), has held an open studio event at Spike Island in Bristol (an international centre for the development of contemporary art and design) and will produce an exhibition. Prof. Julie Kent arranged a tour of NHSBT Filton for PAG members, Dr Katy Connor (artist) and sociology students. Public participation:
We have generated substantial interest in the research being conducted in the BTRU and will continue to utilise all means possible to disseminate our research. This will include building more interactivity into the website, giving public talks and presentations, working with patient organisations, the NHSBT communications function, TV, online articles, publications, and public art exhibitions. With the start of the RESTORE-i feasibility study we intend to add additional information for participants to our website (including short interviews with key investigators) and this content will be reviewed by our PAG members. We will also work with the PAG to develop a broader engagement strategy for the unit. Our PAG originally consisted of both blood donors and people who have conditions such as thalassemia and sickle cell. We are keen to have more involvement from representatives from the latter two groups. Our PPI lead (AG) is in contact with local organisations in Bristol who work with these groups to strengthen this element of our involvement work. We are also working with the Centre of Public Engagement team at Bristol University to develop an engagement event, possible timed for the autumn, which will be designed to strengthen our engagement with these groups.