How we are building public involvement (PPI) into our plans for Melo
The Melo team recently ran a PPI focus group, gaining valuable insights into life of patients, carers and family members who are dealing with the impact of a brain injury.
For Melo especially, it is incredibly important to listen to the views and feedback of individuals living with brain injury - in order to fully understand their wants and needs - so that ultimately we are creating a digital tool with patient needs at it’s core.
In order to find out more about PPI, we sat down with one of Decently’s co-founders, James Chapman, and asked him about the insights he’s gained.
What motivated Melo to implement PPI into your framework?
“Putting users at the heart of how we design and build Melo has been hugely important to us since day one. By working with real people who are facing these issues everyday then as product people we can get a better understanding of their needs and pain points, and by working collaboratively reach a much better solution than if we just focus on the tech. Melo is currently a clinical facing tool, so we had spent 100s of hours speaking to clinicians, nurses, OTs, physios. So at the start of this year we made it one of our goals to start to run some PPI sessions as a way of getting closer to the needs of patients, carers and families so that we can continue to shape Melo as we go forwards.”
How long have you been engaged in PPI work?
“In a formal capacity only really the last 6 months or so, but we have spoken with patients and family members informally over the last few years - however, it is fair to say that this was much less than we had been speaking to clinicians and other healthcare professionals.”
How is PPI going to inform the Melo project?
“Our ongoing efforts around PPI will play a huge part in shaping how we build Melo - from getting input around the perception of a clinician using a digital app to track behaviours, all the way through to how we communicate the benefits of a digital approach to patients and family members. We are also starting to explore the possibility of extending the impact of Melo through building a Patient & Family version - as a way of providing personalised support to patients once they have been discharged - and this will be hugely impacted by ongoing PPI efforts. We are also very keen to bring in patient voice to our ongoing individual research projects and are currently applying for NIHR funding to continue to do this in a more formalised way.”
What have been some of the barriers to utilising PPI within the Melo Project?
“Resource is definitely a signifcant challenge. Having the time within the team to focus on utlising PPI is really important, however without it being a specific responsibility then it is hard to do as much as we would like to. That is where finding expert facilitators and people who are used to running PPI sessions has been key. We have also benefited from time and support from the PPI leads at both Health Innovation Manchester and the Geoffrey Jefferson Institute (Uni of Manchester) who have been helpful in providing guidance around how we best facilitate these kinds of sessions.”
“Sample issues also remain a significant barrier - working with existing PPI groups has meant that finding the right kind of people, who are also willing and able to take part in sessions hasn't been too difficult. However we also need to remember that not all patients are able to and therefore we don't want to create any unintended bias or inequalities by only speaking to those patients who are able and willing to take part. We are being mindful of trying to bring together a diverse group of participants.”
What did you learn from your recent focus group with James Piercey?
“We recently ran a session with James Piercy - who himself is a brain injury survivor - with around 15 patients and family members. This was off the back of meeting James at the UKABIF dinner last year where we spoke at length about the importance of patient voice. James facilitated the session and we discussed a range of themese including: the long term impact of brain injury, emotional and behavioural changes post brain injury, the challenges of current documentation practice, and concerns around the use of digital tools in healthcare.”
Some of the content of the participant’s experiences was very raw. How does this make you feel in terms of the potential impact Melo might have?
“It is always incredibly humbling to listen to individual patients experience and journey they have been on, and often are still on. It reminds us that ABIs can literally hit any one of us at any time, and seeing the impact of this from a patient and family perspective is often very emotional and hard hitting. This often leaves a big impact on us individually - however on the positive side, it can be very inspring to push us on with our mission of supporting clinician, patients and family members. It is a really powerful driver for the team to see the small impact we are already having, and the bigger impact we can have in the future.
This is part and parcel of why we are all working at Decently - to build better tech for better futures - and doing these PPI sessions is always a timely and powerful reminder of this.”
