Vee Mapunde is Associate Consumer Lead at the NCRI. In our latest 60 second interview, Vee tells us about her role at the NCRI, and how consumer involvement adds value.
What is your role at the NCRI?
I am the Associate Consumer Lead and I work closely with Richard Stephens who is the current Consumer Lead for the NCRI. This is the first time that the NCRI has run the role this way, and the plan is that I become the Consumer Lead from April 2018 until March 2019.
Tell us a little more about your role?
My role was introduced to provide the carer perspective to the leadership of the NCRI Consumer Forum, and I have been tasked with increasing involvement from seldom heard groups, for example, black and ethnic minorities, teenagers and young people. I am also investigating how the NCRI can effectively use social media to increase awareness of its activities beyond CSGs and the national conference; as well as increasing capacity and opportunities for current NCRI consumers.
How could the NCRI improve consumer engagment?
Engagement entails sharing information and knowledge about research by professionals, and we probably do not do enough of this under the NCRI brand. There are plenty of opportunities nationally to engage with the wider public, patient groups and other professionals too. As someone who is based “Up North” the common complaint I hear, is that everything is too London-centric and for some, that is enough to disengage from the NCRI. I understand why things are this way, and funding plays a role in that, however there is some value in considering consumer-led spokes, as I believe they will probably be more effective in adopting the appropriate strategies that meet the needs of their particular demographic.
How does consumer involvement add value?
Involvement adds value by allowing patients, their carers and the public to influence the outcomes of research. This can involve making sure the patient information is appropriate and clear enough to influence participation on specific clinical trials; the research considers outcomes that are important to the patient; the research considers the necessity of the use of invasive procedures; research results are communicated and disseminated to the audience most affected by it; and more importantly, influence that enables the outcomes to be widely adopted across the NHS, so that it does benefit everyone with that condition.
What have you enjoyed working on so far at the NCRI?
As I currently have 20 hours a year to fit all this in, I have enjoyed meeting and talking to different consumers, and members of the NCRI team. These discussions help to provide the context for any initiatives I might propose in the future. For example, I worked on revamping the consumer website by suggesting structural changes that would make it easier to find relevant information for someone that is completely new to the NCRI. I am also working with NCRI on aligning our social media and BME strategies.
What else do you do besides your work at the NCRI?
My normal day job is with the Colorectal Therapies Healthcare Technology Cooperative (NIHR HTC) where I am the Programme Manager and work with engineers, academics, clinicians and patients to develop minimally invasive technologies and therapies for colorectal conditions. Patient and public involvement runs through the entire programme as we would not be able to realise any outcomes without the involvement of our patients. All the technologies and innovations we develop have to meet an unmet need, which is almost always identified by the patients and their carers. So I do get an enormous sense of fulfilment knowing that I work for an organisation that is driven to improve hard patient outcomes.
How do you see consumer involvement at the NCRI developing over the next 12 months?
Consumer involvement will boldly go where no involvement has gone….Sorry, just had to put that in there. I want consumer involvement to demonstrate impact and value, without people having to dig for this. It’s about having structures that enable consumers to decide and control their level of involvement. I want consumer involvement to have tangible outcomes for those patients and carers that will benefit the most, and I want the research community to wonder how they lived for so long without the NCRI Consumers as a resource. This is the age of people taking an active interest in how research impacts on them, and it is only right that we take advantage of technologies and resources available to us.