Introducing the Public and Patient Involvement (PPI) Group
My Name is Keith Wilson.
I am the Public and Patient Involvement (PPI) Lead for the NorthWest Coast Genomic Medicine Centre, delivering the 100,000 Genome Project. I am not an academic or a clinician. I am a former patient at Liverpool Heart and Chest Hospital Trust, who has been involved with many patient groups, advising clinical research projects in a voluntary advisory role for over 14 years, now supported financially by The Lord Leverhulme Charitable Trust.
One of my roles within this project requires that I promote the involvement of the general members of the public. This was originally done by asking each of the local delivery partners (participating trusts) in our region to provide us with a public member to represent their organisation. This allowed us to create a group from across our region. We will also include a further five members from their participants in the project. This first-hand knowledge and experience of the project will prove invaluable to our group. Sadly this project is not only about conditions effecting adults, but children and young adults too. We are really fortunate to have a world class paediatric hospital, Alder Hey in our region, which we have been working with. They have their own Young Persons Advisory Group run by Jennifer Preston; this group have given invaluable advice on many of the aspects of the project which involve children or young adults.
The main role of the PPI group and everyone else involved in this project is to protect the interests of the participants and their families at all times. An example of this was when, as a group, we thought the wording and complexity of the original patient information sheets and consent materials issued by NHS England favoured the legally minded. We have worked tirelessly, along with other regional public and patient involvement groups, to change the documentation and consent forms to suit all.
We are never sure if we have made any real difference, but recently I had the opportunity to go with one of our project nurses to view the consenting process. There was a father and son. The father was in his eighties and the son was in his late forties. They had both developed the same condition later on in their lives without any warning. I listened to the process and watched as the both of them agreed to participate in the project. The younger man saying he was doing this for his children, his grandchildren and their grandchildren.
I spoke to the both of them after they had finished. We discussed my role and the involvement the public has in the project. They were pleasantly surprised. I asked if there was anything in the process or documentation which they felt could be improved. I was told the documentation was a bit lengthy but they could both understand it. So I believe our involvement as general members of the public in this project can and has made a real difference, not just for these two individuals but in the words of one of them "for their grandchildren and their great-grandchildren".
Posted by: Keith Wilson, Public and Patient Involvement (PPI) Lead for the NorthWest Coast , on: 09 February 2016