Patient and Public Engagement & Involvement

Purpose of the report

To provide an initial report on the current state of patient and public involvement and engagement (PPIE) within Dorset HealthCare.

To examine steps currently undertaken within patient and PPIE at Dorset Healthcare and highlight future course of action.

Summary

PPIE is way of actively working with patients and the public to develop and improve the design, implementation, and dissemination of research. It ensures that research studies are done ‘with’ or ‘by’ the public, not 'to', 'about' or 'for' them. In this report we outline the key principles of PPIE and why it is important as well as the current position of PPIE at Dorset HealthCare. We further discuss the outcome of a meeting with the Experts by Experience group, the main learning points, and further actions for our Research & Development department.

What is PPIE

When thinking about taking part in research, what usually springs to mind is becoming a participant in a study or a clinical trial. However, there is much more the public can do to support clinical research. Patient and Public Involvement and Engagement (PPIE) is a way of actively working with patients and the public to share information and knowledge about research and its importance as well as working in partnership with them to develop and improve the design, implementation, and dissemination of research. It aims to include patients and the public in all stages of the research journey to ensure their needs, views and experiences are taken into consideration. The goal of PPIE is to ensure that research is carried out “‘with’ or ‘by’ the public, not 'to', 'about' or 'for' them”. A key group that should be considered and included are people with lived experience of the area being investigated, often referred to as Experts by Experience, who may have the specific and unique insights which are invaluable to the research. A distinction is often made between ‘engagement’ and ‘involvement’, where the former usually refers to spreading awareness of research whereas the latter refers to patients and public being directly involved in how research is designed and conducted.

For example, public and patient engagement can include (but is not limited to) activities such as:

-          attending or running events to raise awareness of research

-          disseminating study findings & results to participants as well as the public in general

-          spreading awareness of research through social media

-          conducting research open days to promote the importance of research

Public and patient involvement would include such activities as:

-          commenting on proposals and research applications to ensure the research reflects the needs and priorities of the patient group

-          reviewing study materials (e.g., participant information sheets, leaflets, questionnaires) to ensure they are easy to understand and use appropriate language

-          discuss research methodologies

-          helping identify pitfalls, practical difficulties, and barriers to participation

-          helping understand if the target demographic would be interested in taking part, and if not, how that could be addressed

-          helping with translation of study results into lay person understanding

-          discussing how results can be used to alter clinical practice

Why is it important

There are many reasons why involving the public and patients in research is important and ultimately beneficial to the research itself and those responsible for its design and implementation.

Consulting patients and the public allows researchers to improve the study design before it opens to recruitment. It helps ensure that the study being offered is of interest to the target group, falls in line with their concerns and priorities, rather than those of the academics, and that what is being asked of the participants is appropriate and not unduly burdensome. It helps researchers create study resources that are clear and understandable to the target group, and which use appropriate language that does not stigmatise or offend. This in turn supports a more robust and ethical consent process, with participants having a clearer understanding of what they are signing up to. It aids researchers in understanding the study from the participants’ point of view and in understanding the day-to-day aspects such us when and how it is best to approach patients about the study or how far they would be prepared to travel. Consulting patients and the public in dissemination of findings can also ensure that the findings are communicated in a way that is accessible to all and ultimately reaches the affected communities. Taking into consideration the views and perspectives of patients and the public in a study provides a better, more positive experience to the participants taking part, which in turn can have a positive effect on recruitment and retention.

Furthermore, evidence of PPI is often required by Research Ethic Committees (REC) and academic journals. It can also have a positive effect on the REC ethical review process as PPI activities help address issues which the RECs consider in their reviews, in turn resulting in fewer revisions to study documents. 

PPI at Dorset HealthCare

Currently, Dorset HealthCare operates a small Research and Development department. We are largely funded by the National Institute for Health & Care Research (NIHR) and primarily conduct NIHR portfolio research. This research has always been designed and sponsored by external organisations (such as universities or UKHSA) who are responsible for Patient and Public Involvement activities associated with those studies. So far, within our Trust, the focus has been on patient recruitment and engagement rather than involvement. Nonetheless we want to develop and involve our patients and the local community in how research is to be conducted at Dorset HealthCare to ensure their voices are heard and to provide them with a positive experience. It is also our aim as a department to grow and, in the future, design and sponsor our own research studies. To do this we need to embark on consulting our patients and the Dorset community in how our research is run.

One of the first steps we have taken towards this is to organise a meeting with a group of Experts by Experience, a selection of patients who were willing to speak to us and provide us with a better understanding of their views on NHS research endeavours.

Experts by Experience Meeting

Time & Place: 31 January 2022 via Microsoft Teams

Attendees:

-          Samantha Adkins - Participation Development Lead (currently on secondment from Jenny Purcell) 

-          Deanna Rex - Senior Research Practitioner

-          Julie Hyde – Research Nurse

-          Katarzyna Malczuk – Clinical Trials Assistant (currently a Research Practitioner)

-          Experts by Experience

The Experts by Experience is a well-established group which consists of several attendees from various backgrounds including carers, people with lived experiences, patients and previous research participants. The group meets regularly but the attendees can vary, depending on who is available and interested in the given topic, in this case research within Dorset HealthCare.

Meeting discussion

As a department, we wanted to meet with the Experts by Experience to discuss and discover their awareness and opinions on research within our Trust. Mainly, whether they are aware of the research opportunities available to patients, what their general opinions are on research studies, what would encourage (or equally discourage) them from participating in research, and what we as the research department could do to improve in the future.

Within the Experts by Experience attendees present, there was a mixture of people, ranging from those who have been involved in research in some capacity to others who were not aware that we conducted research within our Trust. Most of the group fell into the latter category. The experts who had previous experience explained that they have only been approached about it on one occasion and those who had not previously been involved, have never been approached to participate. However, all the experts were open to the idea of getting involved.

What was highlighted in this discussion was the lack of awareness and accessibility to research opportunities. The experts explained that they would not know how to get involved if they wanted to, without being approach by a researcher or a clinician. Our department website was mentioned by the experts, pointing out the general lack of information on the page.

One of the key factors for taking up participation in research was location, specifically the importance of research taking place somewhere that was close or easily accessible. One of the experts explained that they were previously involved in a trial which required few hours of travel. They explained that they were not able to continue with the study due to the onerous travel commitment.

We also discussed how and when they would like to be approached to potentially participate in research studies. The general consensus was that being approached when they were ‘on the mend’ was preferred. They explained that, if approached whilst still quite unwell, they would be less open to participating in research as their priorities are elsewhere in that situation. It was also highlighted that being approached face-to-face was preferred and very important to them.

Another aspect discussed was receiving feedback about the research. The experts indicated that they would like to be informed about the results of the studies they participated in. It was important for them to receive this feedback in order to see the impact of their participation and a reward for the time they committed to taking part.

When discussing what would encourage them to participate in research, one of the experts mentioned that they would like to have an opportunity to talk to other people who have previously participated in a research study (i.e., people with lived experiences of participating in trials). They explained that they would find this reassuring.

Finally, a concern brought forward by one of the experts was the financial aspect of research trials. Their initial view was that there is an ulterior motive in research that is money driven. More specifically, that those conducting research studies are motivated by the financial benefits they receive and are concerned with the money over patient wellbeing. We took the time in the meeting to explain how the funding for our research works and debunk some of the misconceptions. However, it became clear from the conversation that a wider approach to clarifying the money aspect of research is needed.

Key learning points

Below is a summary of the key points we have learnt as a result of our discussions with the experts. In order to develop as a department and expand our research and PPIE initiatives we need to:

-          Raise awareness of our department and the research we conduct amongst patients and the public

-          Make the research opportunities more accessible

-          Ensure that research takes place in locations which are easily accessible

-          Ensure patients are approached about research opportunities at appropriate times, being sensitive to their current circumstances

-          Ensure that research findings are disseminated to participants and key groups

-          Find a way of connecting patients with lived experience of participating in trials with those interested in taking part

-          Provide more information and education to the public about research in general as well as the different processes, stages and safeguards required, including ethical approvals and how research is funded

Next Steps

Taking what we have learned from our discussion with the Experts by Experience, we have made a list of specific, actionable tasks we would like to accomplish as a department.

Firstly, to design a better, more informative website which can act as an information hub. This will give us a place to provide information about research and how it works, promote our current studies, and disseminate results from trials we have done previously. It will allow people to more easily find out about the research being conducted and give us a place we can direct people to, where they can find out more information.

We are already in the process of negotiating for a better, more centralised, and accessible dedicated clinical trials space. In the meantime, we will ensure that study location is being thoroughly considered when assessing the feasibility of future studies.

Furthermore, we would like to collect a series of testimonies, from our study participants, about their experience of taking part in research within Dorset HealthCare. These statements would be included on our website to provide more information about what the experience is like for people who are interested but might be unsure about participating in research themselves.

Samantha Adkins has invited us back to talk to the Experts by Experience group again, whenever we would find it useful. Once we have had the chance to implement some of the above changes, we would like to attend another meeting with the experts to ask further questions about research (e.g., what kind of reimbursement would they be looking for, would they be open to travel for PPIE meetings, exactly how they would like research studies to be introduced to them etc.)

We would also like to spread more awareness of our department and the research we conduct, both within the Trust and amongst our patients and the community. For raising awareness within the Trust, we would like to attend team meetings in different departments with a brief outline of what we do. For raising awareness within the community, we would like to hold Research Open Days at various locations to speak to patients and the public about what we do, how they can get involved and signpost them to our website where they can find out more information.

Conclusions

We are a small and relatively new research department, as such we are in the beginning stages of setting up PPIE activities, with much yet to be done. The Experts by Experience groups are a great resource for us to tap into, with a range of people from different backgrounds, with different experiences and invaluable insights. We aim to take on board the feedback we have received and implement it in our work, regularly seeking further feedback.

For a PDF of the full report, please email dhc.research@nhs.net

The Weymouth Research Hub is inviting local people to come forward and get involved. This new NHS-backed centre offers people in Weymouth, Portland and across West Dorset the chance to take part in vital, life-saving clinical trials.

Set up in the renovated Linden Unit at Westhaven Community Hospital in Radipole Lane, Weymouth, the hub is a joint venture between two NHS Trusts, Dorset HealthCare and Dorset County Hospital. The team will receive ongoing support from the National Institute for Health and Care Research (NIHR) Wessex, the research arm of the NHS.

The first volunteers to take part will be involved in helping research the best COVID-19 vaccines.

The hub joins three others set up by NIHR Wessex and running very successfully - Southampton, Bournemouth and Portsmouth. Together they work in collaboration with the NIHR Clinical Research Facility in Southampton. These centres played a frontline role during the COVID-19 pandemic in helping with the development of new vaccines. Thousands of people across the south came forward to volunteer and without their contribution it would not have been possible to set up the national vaccination programme.