Date: 23 February 2017
There have been a lot of changes in 2016 that have foregrounded Patient and Public Involvement (PPI) in the study planning process. Will 2017 be the year that PPI, along with engagement, become established parts of research?
Patient and Public Involvement (PPI) is where members of the public are invited to join advisory groups in order to participate in the design and planning of research studies. This is different from recruiting members of the public to participate in research studies.
Below are some of the key areas of change that happened in 2016 and that have contributed to making PPI an important part of the clinical research study cycle:
Patient involvement in ethical review
Guidance has been released that makes Patient and Public Involvement (PPI) central to ethical approval for new research. The Health Research Authority (HRA) are putting a greater emphasis on public involvement at the ethical review stage, which is carried out by the Research Ethics Committee (REC).
According to the HRA, involving patients and the public makes research more relevant, bringing it more in line with the public’s interests and concerns. Going through the PPI process is also likely to challenge the researcher's aims and assumptions and may help define acceptable levels of risk in the study.
Robert Pleass, PPIE lead for the CRN South London, said: "These guidance documents show that the process of involving patients in the early stages of research, including at the research design stage, is becoming better defined and will become more common."
Further specific benefits of PPI were identified, including:
There is a section in the guidance on how to treat members of the public who take part in public involvement and includes the provision of any training they may need.
Doing effective PPI at the start of the research design process is also likely to help shape the process of getting informed consent from patients. This should help with both obtaining consent and then continually retaining it at every stage in the study cycle.
The HRA and INVOLVE believe research that has involved the public at the planning stage is more likely to be relevant and of good quality. The HRA reports on the importance of PPI to ethical approval are available from the HRA Public Involvement in Research page.
The CRN toolkit for implementing patient involvement
The Clinical Research Network has published a toolkit outlining how national and local specialties can undertake PPI and emphasises how PPI, and engagement (PPIE), can improve the reach and understanding of clinical research in both patient and public communities.
The toolkit focuses on PPIE in the CRN network specialties and points out that establishing lasting relationships with patients or patient groups will help during the research planning stage, but can also provide useful feedback at every subsequent stage.
Robert Pleass, PPIE lead for the CRN South London, said: "The CRN toolkit offers specific guidance on how we, as a network, can work with our partners to include patients at every stage in the research cycle."
It can help identify causes when a study is not delivering, and is an easy route to getting patient insight into the development of training following a successful research study.
Along with study design, the new toolkit suggests patients should be included in portfolio development activities for specialties.
To implement PPIE, the toolkit recommends that you map out existing patient groups, networks, organisations and charities within your specialty area then make links with key patient stakeholder groups.
Relationships should be cultivated over time and progress monitored, with the ultimate aim of benefiting research in the specialty, rather than carrying out PPIE for its own sake. The full CRN toolkit can be found here.
New HRA patient and public website
The Health Research Authority (HRA) launched their new patient and public web pages that invite website visitors to find out more about being involved in research as well as understand the importance their involvement can make to people’s lives.
The launch followed the HRA's announcement earlier in the year that PPIE will start to play a more prominent role in the approval of research studies from now on.
Described as an accessible format with useful and insightful information, the HRA provides another platform on which more people can be involved and share in the benefits of clinical research. You can view the HRA’s Patient and Public web page here.
The new PPIE Learn Zone
A learn zone for PPIE has been launched on the newly branded NIHR website.
The learn zone acts as one central place for many of the NIHR’s PPIE resources and is intended for patients, staff and anyone else with an interest in patient focused research with the aim of helping people get started on their own journey of learning and inquiry into research and PPIE.
It includes sections on discovering research, on patient involvement opportunities including the Patient Research Ambassador Initiative, and on where to go to take your PPIE education even further. The opportunities PPIE offers can be found on the PPIE Learn Zone.
Launch of the PRAI pages
The pages for the Patient Research Ambassador Initiative (PRAI) have been launched on the new NIHR website to reflect the renewed emphasis in 2017 on the value Patient Research Ambassadors (PRAs) bring to healthcare research.
PRAs are people who recognise the value of research and are willing to contribute their time and effort to the research process. They could be a patient, service user, carer or lay person and they should enjoy talking to others about healthcare and healthcare research.
The web pages include an explanation of the initiative and the role of PRAs. There is also a video of David Chuter on why he decided to become a Patient Research Ambassador.
Find out more about the initiative, watch the video, and think about who you might like to invite to become a PRA in the new year by visiting the Patient Research Ambassador Initiative web pages.
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