I1 JPRO proceedings: PROMs research conference, University of Birmingham, 20th June 2018
Elizabeth Gibbons3, Melanie Calvert 4,5, Jennifer Bostock1, Magdalena Skrybant2
1University of Oxford, Oxford, United Kingdom; 2University of Birmingham, Birmingham, United Kingdom; 3Health Services Research Unit, Nuffield Department of Population Health, University of Oxford; 4Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, University of Birmingham, Edgbaston, Birmingham, UK B15 2TT; 5NIHR Birmingham Biomedical Research Centre and NIHR Surgical Reconstruction and Microbiology Research Centre, University Hospitals Birmingham NHS Foundation Trust and University of Birmingham B15 2TT
Following the success of the last two PROMs Research Conferences held at University of Sheffield (2016), St Anne’s College, University of Oxford, (2017) we report the proceedings of the 2018 conference hosted by the Centre for Patient Reported Outcomes Research at the University of Birmingham, UK on 20th June 2018.
Aims of the conference:
The aim of the conferences was to bring together leading international experts, clinicians, patient partners and early career researchers to engage with the latest advances in the field of PROMs research and implementation.
Key funding and support was provided by the following NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRC): Oxford, Yorkshire & Humber, West Midlands, West and East of England. Further support was given from West Midlands Academic Health Science Network and the conference was endorsed by the International Society for Quality of Life Research (ISOQOL).
The important role of patients and the public in planning, attending and presenting at the Conference was acknowledged through the ‘Patients Included’ Chartermark.
Oral and poster abstracts were encouraged from clinicians, researchers, patient partners, industry, SMEs and others working in the field. Several presentation prizes were awarded.
There were two stimulating plenary sessions: PROs from a regulatory and patient perspective and the evolution of Patient and Public Involvement in PRO research.
Dr Daniel O’Connor from the MHRA discussed the importance of incorporating the patient experience throughout the drug development process and outlined several international collaborations aiming to gain consensus on PRO methodology such as SPIRIT-PRO and SISAQOL.
Dr Tessa Richards, senior editor of the BMJ, carer and cancer patient presented a powerful narrative of how challenging it is for patients to make decisions about treatments in the absence of patient outcomes and experiences information.
Dr Kirstie Haywood, Lead of the PRO Research programme, University of Warwick provided a detailed overview of the advances in Patient and Public Involvement in PRO research. Current guidance could facilitate co-production of future PRO research.
Gibbons is funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Oxford at Oxford Health NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.
Calvert is funded by the NIHR Birmingham Biomedical Research Centre and the NIHR Surgical Reconstruction and Microbiology Research Centre at the University Hospitals Birmingham NHS Foundation Trust and the University of Birmingham. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
There were a large number of abstract submission: n=115; following peer review, n=36 oral sessions’ and n=79 posters.
There was a huge emphasis the inclusion of PROs in innovative methods and digital technologies ranging from the evaluation of digital capture to inclusion of PROs in platforms to support self-management.
PROs in chronic diseases/different settings .Presentations included the use of PROs in primary care and A&E, specific conditions: inflammatory conditions, musculoskeletal and chronic pain as well as cancer, joint replacement, and rare conditions.
Cutting edge methods. A broad range of novel statistical, evaluations of innovations and approaches to capturing PROs from specific populations such as carers and patients with dementia and impact of PROs in clinical trials
Pushing boundaries included examples of patient and public involvement in research in terms of outlining good practices and frameworks for meaningful PPI, co-design of PROs
Digital capture Presentations illustrated the emergence of digital technology and innovations to include PROs to capture symptoms and adverse events; evaluation of paper and electronic administration and the online development of PROs to support self-management. Digital approaches for specific conditions were also presented: orthopaedics, kidney disease and trauma.
Further oral presentations were presented under the Minimising PRO waste theme and Economic Evaluation.
152 delegates attended including 5 patients.
PROMs includes Patients!
Magdalena Skyrbant: PPI/E Lead CLAHRC West Midlands
For the first time, the PROMs Conference was awarded the ‘Patients Included’ Chartermark. Patient/public partners were valued members of the Conference Organising Committee and their contributions influenced the content and delivery of the event. In particular, patient/public partners wanted the Conference to be an opportunity to underline the importance of involving patients in PROs development, share best practice, and explore new ideas/strategies. This was achieved through: Plenary Discussions, which offered both patient and academic perspectives on patient involvement in PROs research; a dedicated panel on ‘Pushing the Boundaries of Patient and Public Involvement (PPI) in PROs research’; and presenting an award to the research team demonstrating the ‘Best PPI’. The Conference was co-chaired by patient partner, Gary Price, which underlined the clear commitment from the Conference Organisers to public involvement in PROs research.
In addition to planning and delivering the PROMs Conference, the Organising Committee were keen to incorporate insights and perspectives from patients during the event. 10 bursaries were offered to patients/public (5 delegate/5 delegate + travel) to enable patients and the public to attend and participate in the event and present issues most important to patients.
A measure of how successful PROMs 2018 included patients is the integration of patients and the public at the event. Both during and in between sessions, patient and public delegates mingled effortlessly with researchers. There were opportunities in the Conference for patients and the public to discuss current research, challenge ideas, and influence avenues for future exploration.
It is hoped that the next PROs Conference will build on the success of including patients and that more patients will attend, ensuring that all future PROMs research benefits from the rich contributions patients can offer to make research more relevant and more successful.
Jennifer Bostock: Public Advisor, Nuffield Department of Population Health at the University of Oxford
I am a patient/public research advisor to the Nuffield Department of Population Health at the University of Oxford where I have been working on various projects for a number of years. Amongst these projects is number involving PROMS of one kind or another. My interest in PROMS (apart from the marvel that is the BBC concert series) stems from my experience as a patient and carer completing these questionnaires whilst in waiting rooms, consultations and post consultation. It has intrigued me what happens to the information I give on the questionnaires and what is the point of them. It is the answer to these questions that I had in mind when I attended the 2018 PROMS conference.
The conference took place in the splendour of the University of Birmingham’s Great Hall, my first trip, but hopefully not my last. The conference was very well organized, well attended and the presentations and stalls were varied, interesting and inviting with lots to interest academics, clinicians & patients.
I was there to watch, listen, enjoy and to see if my questions were answered. Were they? To an extent yes, but what us patients have to remember about academic conferences is, that although the subject might be ‘patient orientated’ that is that PROMS are ultimately about helping improve ‘outcomes’ for us patients, conferences are really places run by and for academics. Hence some of the presentations were somewhat esoteric, falling into the spiral staircase that is PROMS methodology. But these were not designed to entertain or inform people like me, but what was were the presentations under the rather ambiguous title of ‘Pushing Boundaries’ where the audience were told about the ways in which patients/carers and members of the public have been involved in PROMS research. I was there to listen but also as part of a lay judging panel and so I listened with great attention, to the style, content and delivery all of which were different but interesting in their own ways. The one that stood out for me and became the winner in the category, being judged unanimously by the panel, was Grace Turner and Gary Price (patient partner). It wasn’t so much the clear commitment, enthusiasm and value placed on PPI which was evident both in this presentation and indeed in all, but the rather brave attempt to creatively involve the patient partner. This was most clearly demonstrated by the showing of a simple photograph, one with Gary and members of the research team at an engineering firm. Why such a photo? Because the patient partner is an engineer and he invited the researchers to see ‘how it’s done’ in his profession, and the researchers took the unusual step of accepting this offer. The result was an insight into a world outside academia, outside the clinical environment and into private sector engineering. Lessons learned, stories told and tips exchanged the research team not only had a jolly good day out but a host of ideas which they could put into research practice. This sharing of professional worlds is something I have been long advocating having worked in private and public sector diverse fields and recognizing that many academics have only ever worked in universities or for the NHS.
What is the recipe for such PPI success? 1 part willingness, 2 parts right people & 3 parts imagination, creativity and bravery. I found this an inspiring and engaging presentation on what might otherwise be a rather dry subject, for PROMS, no matter how important and useful they may be, are not the most tempting of subjects with which to inspire, but inspire this one did.
In sum the conference was an enlightening affair, interesting people, doing important work and in a superb setting – oh and there’s a pretty good art gallery next door which I also found myself being inspired by…..
Presentation Prize Winners
Several prizes were judged and awarded as follow:
Best Oral: Early Career research award: Jenny Harris, Handling missing PROs for multivariate models: a practical guide to multiple imputation using chained equations
Best Poster: Best PhD poster: Sally Appleyard, Barriers to remote electronic completion of Quality of Life Patient reported outcome measures: qualitative results from a feasibility study in men with advanced prostate cancer.
Oral or Poster: Best patient and public involvement award for the team which have demonstrated excellence and/or innovation in involving the public: Grace Turner, Olalekan Lee Aiyegbusi, Derek Kyte, Anita Slade, Magdalena Skrybant, Gary Price, Melanie Calvert, Embedding patient and public involvement within the Centre for, Patient Reported Outcomes Research.