Making your research matter to people living with and beyond cancer #LWBC2019
The National Cancer Research Institute (NCRI) and NHS England co-hosted the #LWBC2019 Living With and Beyond Cancer (LWBC) event in Manchester on 29-30 April 2019.
The NCRI-hosted day on 29 April, sponsored by Macmillan Cancer Support, was entitled ‘Making your research matter to people living with and beyond cancer’. It was dedicated to facilitating discussions, ideas and collaborations around the top UK Living With and Beyond Cancer research priorities. The priorities were identified by cancer patients, carers and health and social care professionals with the help of the James Lind Alliance (JLA) and launched at the November 2018 NCRI Cancer Conference,
The LWBC research day brought together members of the LWBC research community – clinical academics, patients, carers, students, NHS social and health care professionals, charities, research funders and others – to discuss and debate some of the key issues around expanding the LWBC research field. Read our brief summary* of the day below including notes from each workshop and highlights of the key themes to emerge across all of the workshops.
* This is a summary of the event held on 29 April 2019 and reflects the views expressed, but does not necessarily represent the views of all participants, the National Cancer Research Institute, or other institutions and organisations involved.
The morning featured the following plenary sessions.
The Living With and Beyond Cancer (LWBC) research priorities
This kick-off session was co-presented by Professor Diana Greenfield, Consultant Nurse at Sheffield Teaching Hospital NHS Foundation Trust, and Richard Stephens, prominent patient advocate and member (and former Chair) of the NCRI Consumer Forum. Richard and Diana were both part of the Steering Group that advised on the two-year JLA Priority Setting Partnership to identify the top LWBC research priorities. They shared their respective professional and patient perspectives on the process and the resulting LWBC research priorities.
The role of the NCRI in developing LWBC research studies
This session was presented by Nicola Keat, NCRI Head of Clinical Research Groups, and Professor Sam Ahmedzai, NIHR Clinical Research Network (CRN) National Specialty Lead for Supportive and Palliative Care Research and Co-Chair (with Professor Galina Velikova) of the newly formed NCRI LWBC Group. Nicola’s talk gave an overview of the NCRI Groups (formerly known as Clinical Studies Groups) and their vital role of developing high quality cancer research studies. The audience were also given a preview of the newly formed cross-cutting NCRI LWBC Group that will serve to develop future LWBC research studies. Sam followed with highlights of previous and current LWBC studies to showcase what the NCRI Groups are already doing.
Successful LWBC study design
This session featured presentations from Dr Derek Kyte of the Centre for Patient Reported Outcomes Research (CPROR) at the University of Birmingham, Professor Claire Foster of the Macmillan Survivorship Research Group (MSRG) at the University of Southampton and Professor Richard Shaw, NIHR CRN National Specialty Lead for Surgical Oncology. Derek’s talk outlined the value of PRO data to LWBC research, the main challenges to PRO research including poor availability of PRO trials data, and key free resources to aid PRO research. Claire shared some of the key ingredients for success in setting up and running a longitudinal cohort study based on HORIZONS, CREW and other MSRG studies. Lastly, Richard gave an insight into of some of the methodological concerns his team encountered in the HOPON and DAHANCA 21 randomised controlled trials.
Funding for LWBC research
The final plenary session was on opportunity for delegates to hear about funding opportunities from Macmillan Cancer Support, the National Institute for Health Research (NIHR), Marie Curie and the Medical Research Council (MRC).
The afternoon provided delegates an opportunity for more focused breakout group discussions in four parallel workshops themed around the LWBC research priorities.
Models of care
This workshop was facilitated by Dr Agnieszka Lemanska, Lecturer in Integrated Care at the University of Surrey. The workshop aimed to explore some of the key issues around addressing the no. 1 LWBC research priority: What are the best models for delivering long-term cancer care including screening, diagnosing and managing long-term side effects and late-effects of cancer and its treatment (e.g. primary and secondary care, voluntary organisations, self-management, carer involvement, use of digital technology, etc)?
Consequences of treatment
This workshop was facilitated by Professor Clare Foster and Dr Eloise Radcliffe from the MSRG. The workshop was an opportunity to discuss the research priorities focusing on consequences of cancer treatment. For the workshop’s purpose the priorities were broadly grouped under ‘symptoms and side effects’, ‘psychological impact of cancer and its treatment’, and ‘social and economic consequences of cancer’.
The challenges of Patient Reported Outcomes (PROs) in LWBC research
- The value of PROs to LWBC research
- How to select Patient Reported Outcome Measures (PROMs) for LWBC research
- How to engage the oncology research community to embed LWBC PROs in research to address the research priorities
- The challenges around PRO data collection and access
Keeping research close to the patient
Our final workshop was facilitated by Professor Diana Greenfield. This workshop was an opportunity to discuss more ‘people-based’ LWBC research by ‘frontline’ clinicians. It explored some of the key barriers, facilitators and opportunities around:
- Generating LWBC research questions, and subsequent funding proposals, from the frontline
- Building LWBC infrastructure at the frontline
- Evidence dissemination
Some key themes emerged across all four workshops, which are summarised below.
Observation gap in patient LWBC pathway
There is an observation gap in the patient pathway post oncology, of who’s monitoring them for mental health issues and long-term/late effects.
- There are currently no clear healthcare pathways available for people LWBC to get information or help for late effects of treatment. Some work is needed to determine these ‘touch points’, to find out where patients LWBC want to or could go for support and information.
- If primary care is best placed to fill the ‘LWBC patient overview’ role, what is needed to facilitate this, and more immediately what is the likely impact of this additional work on an already stretched service?
- If more patient self-management, eg with help of digital technology, is part of the solution, how could this look like and be developed?
PROs and other data collection and reporting
Poor data collection, standardisation and interoperability is a hurdle to LWBC research. Improvements needed include:
- Routine collection of PROMs and PREMs – essential.
- Publication of all PRO data – also essential.
- Research into patient interaction with current health services post oncology pathway for ‘baseline’ data on effects management to inform improvements/changes needed.
- Measuring recovery package outcomes.
- Finding a way to track late effects, eg exploring more use of self-reporting technology.
- Looking at feasibility of primary care taking on linking of cancer diagnosis, treatments and late effects data.
- Looking at feasibility of a PRO data repository/databank for secondary analyses – eg who would pool/host/fund? How to best share information with patients and health and social care professionals?
LWBC research funding
Need dedicated large funding schemes to encourage researchers to join/stay in this field. Existing funding that do cover LWBC research priorities also need highlighting/communicating better to research community.
Frontline LWBC research capacity
‘Frontline’ research work is critical for informing and influencing LWBC care. Lack of research skills and general awareness is an issue. Challenges nursing staff for example involved/interested in research face include no protected time and funding for research pursuit, lack of clear avenues of support for building up research skills, and little colleague/managerial support. More needs to be done to embed and protect audit and research time in clinical (particularly CNS) and AHP roles.
The patient voice is critical for designing optimal LWBC care:
- Any new service on pathway must be shaped with patient input, from early on and throughout, particularly in reassessing and redefining success endpoints from increasing survival to improving quality of life.
- More is work needed to get diverse cancer types and demographic representation on patient advisory groups and boards.
- More enablers are needed for patient involvement in research, eg research opportunities offered closer to diagnosis and consistently, and less academic/healthcare jargon in patient communications and study protocols.
The academic research model, with its emphasis on REF and journal impact factor and that stops at publication, is not in the best interest of patients. There is a lot of room for improvement, including:
- Study designs (and funding) need to include impact delivery, and funders need to take on more role in ensuring impact
- Getting the right team together at the start of the study to maximise the chance of a successful outcome influencing practice (include patients, academic clinicians, frontline clinicians, AHPs, researchers, policy makers, NHS managers)
- More equity across trusts in research involvement opportunities for patients
- More lay outputs for research transparency as well as journal papers and conference presentations/posters, especially for patients contributing to studies
- Better, wider and quicker dissemination of all evidence generated, particularly PRO data, using a variety of mediums. Timely and full publication of all evidence should be part of funding conditions
- More engagement with industry for patient-centric mixed-methods research, output variety and quick impacts
Promoting PROs capture, PROMs use and publication of all data
PRO data is vital for LWBC research. More needs to be done to ensure the timely publication of all clinical trials PRO data with the help of funders, to facilitate PRO data collection in routine care, and to make the data accessible/available for secondary analyses. Consider:
- Training for researchers on selecting/using PROMs
- Training for research nurses on PRO data collection
- Patient education on the use and value of PRO data, to encourage participation