The patients’ perspective is valuable, says Malayka Rahman.
Asthma UK is the charity dedicated to people with asthma in the UK. Its journey towards patient involvement in research began around 2008, when a consultation was held with supporters. The feedback sent a clear message that people affected by asthma who were not scientific researchers wanted to participate in and contribute to Asthma UK’s research agenda.
This heralded a change in the way the charity was to fund research. Whilst it had always supported the best quality science, now there was to be a mechanism for ensuring the research was also relevant to the lives of people with asthma. And so the Research and Policy (RaP) volunteer group was formed, where members were to share a unique insight into the patient perspective, influencing research and shaping Asthma UK’s campaigning activities.
Not surprisingly, with this change came challenges. Tackling preconceived ideas of the patient’s role in research was difficult, both for patient and researcher. We also needed to articulate clearly the value of patient involvement to our stakeholders/staff and supporters in order to justify resources being spent on this area when the recession impacted on the income of many charities.
In order to gather evidence around the value of patient involvement, we piloted involvement in Asthma UK’s grant round. The results showed that people affected by asthma were able to take on the role of a lay reviewer and assess applications from a non-scientific perspective.
In addition, contrary to the initial concerns of researchers, the lay reviewers were not biased against the more basic lab research-focussed applications. As one volunteer put it, ‘Even though the benefits to people with asthma seemed a long way off, we understood that some of the research projects were part of one small step in a long chain of research that's needed.’
Over the years Asthma UK’s Research and Policy volunteers have shown that they can influence asthma research in many ways, from identifying priority areas for research, to being lay reviewers, to sitting on Steering Committees for clinical trials.
Some people may wonder how a person with no scientific experience can become involved in an expert scientific process. In fact, people with asthma are often experts themselves – they know what it’s like to live with their condition.
Whilst researchers have the scientific and medical knowledge to comment on which applications are the best science, people affected by asthma can comment on whether people are likely to take part in procedures for studies or how important the study outcomes are for people with asthma. Both types of knowledge are important and both have equal value.
Value of involvement
The charity has received a lot of good feedback from scientists involving RaP volunteers in their work. Involvement at the study design stage has meant that scientists are more able to recruit to their study because they’ve checked that what they’re asking participants to do is reasonable.
In Research Review Panel meetings, lay members of the panel will ask the ‘so what?’ question. Their presence and input is extremely valuable for focussing discussions on how the research would ultimately benefit people with asthma and ensure the charity’s money is well spent.
Asthma UK also facilitates involvement in external research opportunities. For example, a number of RaP volunteers sit on Steering Groups for a European-wide study on severe asthma . They not only comment on aspects of the ethics and safety of work with study participants, but are also ambassadors for the project, working to take the research beyond the realm of the scientist into the public domain.
As Asthma UK’s patient involvement journey progresses we continue to identify new ways for people affected by asthma to get involved in research, which we hope will benefit both the patient and the researcher.