The balancing act: How patient engagement can improve recruitment and retention

As a pediatrician I’m really interested
in the opportunities of research for children, for their benefit, but I also
see the challenges of those and what’s important I think when we approach
families and children to take part in studies is to see a balance between the
burden of their disease and the ask of the protocol, and these really need to be
matched up so that if the burden of disease is relatively light they’re able
to carry on daily activities then the ask of the protocol is also not too
severe, not too many blood tests, and not too
many visits, and if there’s a mismatch between these two, in other words if the
burden of the disease is lighter and the asker research is very heavy, then
there’s going to be a problem recruiting into that study. Getting the balance
right between the ask of the research protocol and the burden of the disease
for the child and family is important across all research, but really important
for life sciences because often those studies are more rigorous and that’s why
I think it’s so important to bring patients and life sciences together, it’s
something I’ve had experience of as a pediatrician but I think that experience
and the lessons are applicable across all ages and specialties so I’m really
pleased to support the NIHR Patient Engagement Service which is
doing exactly that, it’s offering an early opportunity for life sciences to
engage with patients who want to help them develop their protocols or develop
their information with the ultimate aim of making that research more efficient,
more effective, and delivering quickly. It’s difficult to bring patients and
life sciences together, we recognize that there are tensions that exist both for
patients and the public in relation to life sciences but also the life sciences,
their code of practice and some of their regulations which are wholly appropriate,
but can seem like impediments to the way that they
engage directly with patients. So the NIHR, as a publicly-funded body,
supporting patients through the NHS and care, is there to help broker this
relationship in a transparent and appropriate way so that patients and
life sciences can work together to really improve the quality of their work. I would say that this is a difficult process, it hasn’t already happened, it’s
not easy, otherwise what are we trying to offer here. So we need to take it a
little bit slowly and learn as we go along, but that’s not to say that this is
going to be a long and drawn-out process not at all, the point of doing this is to
improve the quality in the efficiency of research across the development program
because I’m interested in getting those medicines for our patients as quickly as
possible, so what I would try and say is put some extra time in upfront in order
to get the process right but expect to pay dividends overall in the study
development program and as we learn as we go along, both life sciences and NIHR
are offering this, then let’s really see the time benefits in the future.