Respiratory Insights - involving patients to improve research
Danielle Roe, our Patient and Public Involvement Manager, shares how involving patients in your research can not only improve the quality of your work, but ensure it has the biggest possible impact on the lives of people with lung conditions.
At Asthma + Lung UK, we’re uniquely placed to hear directly from people affected by lung conditions about the issues that matter most to them. This provides us with rich insights that we can use to support researchers and innovators.
Recognising that researchers are always looking for meaningful ways to involve patients in their work, we set up our Respiratory Insights service. Together, we can ensure that research into lung conditions will have the best possible impact to improve the lives of patients.
A three-step process
We believe that if research is to be meaningful, it has to involve patients. The best way to ensure that your research ultimately improves outcomes for people is to:
1. Base the research question on a real unmet need among the people that will ultimately benefit from your research.
2. Co-create a solution for this unmet need with the people who will use it, based on what works for them and what doesn’t.
3. Test and iterate this solution to ensure that people are able and willing to use it. This will help it have the greatest impact for the people that you intend it to help.
Reducing research waste
By involving patients at the earliest possible stage, we can overcome one of the biggest problems that we see in the research world: research waste. It is estimated that 85% of health research is ‘wasted’, which equates to a worldwide annual waste bill of $170 billion. In reality, this means that a significant amount of research conducted with the aim of improving the lives of patients doesn’t ever reach them.
With patients as the missing piece of the puzzle, we can ensure that the interventions developed – be it a device, a pill or a new care pathway – will truly work for people with lung conditions.
With patient involvement, we can make sure that research doesn’t end with a trial that produces outputs that cannot be implemented in the real world. Instead, we can ask patients whether they find this intervention useful, accessible and valuable to see whether it will have an impact in their everyday lives, beyond the remit of a trial. This not only reduces research waste, but results in real, tangible benefits to the lives of patients.
Our track record
We have a great track record in supporting researchers who are applying for funding to meaningfully embed involvement in their work. Since the launch of our Respiratory Insights service last year, we’ve consulted on over 85 research projects covering a range of lung conditions. We currently provide our involvement and insight consultancy expertise on 30 active research projects, equating to research portfolio size of over £40 million.
“The results of the questionnaire fielded by Asthma + Lung UK were invaluable in strengthening a current grant application in this area. The ability to get feedback on a research question from the people it affects is critical in developing patient focussed investigations. Better care for people with lung conditions is at the heart of everything they do.”
- Dr Hannah Durrington, MRC Clinician Scientist and Honorary Respiratory Physician
If you’re interested in finding out how we can support you to involve patients in your research, complete our short form here.
We empower people with lung conditions to make changes that can be transformative.
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