The National Institute for Health Research are asking for comments and ideas on some draft standards for involving people in research.
Help us improve draft national standards for public involvement in research
Invitation to review and improve draft national standards for public involvement in research
Consultation: draft national standards for public involvement in research
During 2016/17, Health and Care Research Wales, the National Institute for Health Research (NIHR), the Chief Scientist Office in Scotland and the Public Health Agency in Northern Ireland have been working with public contributors as the ‘Public Involvement Standards Development Partnership’. The Partnership is developing a set of national, core standards and indicators for public involvement (PI) in research that can be used by organisations, research projects and individuals to improve the quality and consistency of PI.
Here is a summary of the steps we have taken so far and our plans for future work.
As you can see, we would now like to involve you in reviewing and giving us feedback on the draft standards and indicators. Do they capture what good public involvement in research looks like from your perspective? Will they be of practical use to you? What have we missed out? How can we improve them?
The consultation is running from 29th June 2017 to 1st September 2017. Please visit the project website for more detailed information about the consultation process and to access all the resources you might need:
July 4th saw more than 100 policymakers, clinicians, researchers, representatives from charities, and patients and service users gathered at the House of Lords to celebrate the important applied health research being undertaken across London.
All of the research showcased at the event took place within the three NIHR Collaborations for Leadership in Applied Health Research and Care in London – CLAHRCs South London, North Thames and Northwest London, with the event led by CLAHRC South London.
After a welcome from Lord Nigel Crisp, former chief executive of the NHS, there were some opening remarks. Nick Moberly, chief executive at King’s College Hospital and co-chair of the CLAHRC South London Board, outlined the unique strengths of the CLAHRC partnership model.
Professor Jo Martin (below) from CLAHRC North Thames, an honorary consultant at Barts Health NHS Trust and professor of pathology at Queen Mary University of London, spoke about the depth of applied health research expertise in London, and its impact on health services across the country.
Finally, Sandra Jayacodi, a patient team member in northwest London, spoke about the life-changing impact of being involved in a project to improve the physical health of people with serious mental illness.
Guests were then invited to find out more about CLAHRC research at four themed areas – mental and physical wellbeing, improving health and wellbeing through primary care, tackling the capital’s health challenges, and building research capacity and education.
CLAHRC North Thames projects represented reflected the scope of our research work – Dr Charlotte Woodhead showcased our research evaluating the impact of locating welfare advice in GP surgeries on patients’ health and demand for NHS services; Professor Chris Griffiths explained how the Identification and Referral to Improve Safety (IRIS) programme is improving the response to domestic violence and abuse by NHS services; and Professor Jonathan Grigg presented our work to reducing asthma admissions using a school-based intervention
Our Academy Lead Professor Naomi Fulop outlined our capacity building activities alongside Academy lecturer Dr Victoria Newton.
Professor Rosalind Raine, director of CLAHRC North Thames, said: ‘The event was a brilliant example of collaboration between the CLAHRCs. We’ve had lots of positive feedback from attendees, and there is a real sense of support for creating the long-term infrastructure to ensure that applied health research can meet the significant health challenges of the future.’
Palliative care for children and young people with life-limiting conditions and life-threatening illnesses is a relatively new discipline, and one where current practice in services has developed beyond the evidence base available. Barriers to conducting research in this area are numerous, and span the entire length of the research process.
CLAHRC researchers from the BRAVES project, based at the Louis Dundas Centre, are working to identify these barriers to recruiting children with life-limiting conditions to research, and to develop solutions.
“Establishing robust evidence is going to require concerted effort on everyone’s part: clinicians, parents, patients, and researchers.”
Professor Myra Bluebond-Langner, principal investigator on the BRAVES project, has recently recorded a podcast with the journal Palliative Medicine, discussing the need for an increased understanding of barriers to research in paediatric palliative care, findings from the project so far, and outlining the future research planned by the team.
Initial findings from the study, and previous work at the Louis Dundas Centre, have suggested that fundamental barriers exist at both the individual level, e.g. clinicians’ attitudes to involving young people in research, as well as at the institutional level, e.g. ethics committees and resource constraints, even though children and young people want to participate in research.
“So, why, if we no longer accept paternalism in clinical practice, are we willing to accept it, indeed demur to it, in research practice?
The overall goal of the BRAVES project is to develop guidance based on the experience of all stakeholders, which in turn will help to develop the evidence base in the field of paediatric palliative care.
Based on the findings outlined in the podcast, the research team has since conducted a study investigating the experiences and difficulties of chief investigators recruiting children and young people with life-limiting conditions and life-threatening illnesses to research. The findings from this study are expected to be published soon. The next step for the CLAHRC researchers is to analyse data collected from a nationwide research groups’ applications to Research Ethics Committees, and to interview members of these committees to develop further insights.
Click hereto read the journal article on which this podcast is based.
A new report from healthcare think tank the King’s Fund sets out progress in delivering the Getting It Right First Time (GIRFT) programme deliver improvements in quality and reductions in the cost of orthopaedic care in England.
Tackling variations in clinical care Assessing the Getting It Right First Time (GIRFT) programme gives an overview of the programme, how clinicians have responded and what it has already highlighted in terms of variations of care across the NHS.