{"id":871,"date":"2020-02-03T10:00:35","date_gmt":"2020-02-03T10:00:35","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/perc\/?p=871"},"modified":"2020-02-04T09:55:43","modified_gmt":"2020-02-04T09:55:43","slug":"whats-new-and-promising-in-neuropathic-pain-research-involving-patients-in-research-co-design","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/perc\/2020\/02\/03\/whats-new-and-promising-in-neuropathic-pain-research-involving-patients-in-research-co-design\/","title":{"rendered":"What\u2019s New and Promising in Neuropathic Pain Research? Involving Patients in Research Co-Design"},"content":{"rendered":"
This entry is part 5 of 5 in the series PPI Awards: Round 4 Reports<\/a><\/div><\/div><\/div>
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In conversation with: Donna Kennedy<\/a>, Clinical Specialist Hand Therapy (Imperial College Healthcare NHS Trust) and Postdoctoral Research Fellow (NIHR Imperial Biomedical Research Centre). Working in collaboration with Prof. Andrew Rice<\/a>, Dr Harriet Kemp<\/a> and Dr Whitney Scott<\/a>\u00a0<\/strong>within the Pain Research Group led by Prof. Andrew Rice<\/a>.<\/strong><\/p>\n

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What did you do?<\/strong><\/p>\n

The Pain Research Group investigates neuropathic pain in the context of infectious diseases, diabetes and nerve trauma. We undertake patient profiling studies, which include cognitive, psychological and physical measures such as skin biopsies and quantitative sensory testing. Previously, our group\u2019s public involvement work has been very study-specific and has not typically engaged patients early in the research cycle. In addition, while we recently produced a group video and have begun to build our group website, we haven\u2019t had the benefit of involving patients in the development of these communication tools to ensure they are fit for purpose.<\/p>\n

Therefore, to improve patient engagement in, and co-design of, our group\u2019s research activity, we hosted two patient workshops. Workshops were held in our lab at Chelsea & Westminster Hospital, and were attended by 18 patients who were of different ages, genders, ethnicities and were living with neuropathic pain caused by a variety of medical conditions. To accommodate peoples\u2019 different schedules, we held one workshop in the early evening and the second in the early afternoon.<\/p>\n

Two patients, both of whom had been involved in previous research projects, were heavily involved in the planning and designing of these workshops. They were involved right from the beginning, when we first put together our Public Involvement Grant funding proposal for this idea. These patient co-applicants provided advice regarding the content and style of our event promotional material and advised on the timing of activities and physical movement of participants through the lab space. At each session, one of the two also shared their experience of participating in the co-design of research, helped to facilitate our group discussion and answered any questions from the attendees.<\/p>\n

Both workshops involved a tour of our labs, demonstrations of our pain and sensory testing equipment, viewing our group\u2019s neuropathic pain research video and showcasing our website. \u00a0A presentation on the latest research developments in neuropathic pain provided excellent background for a frank and inspiring group discussion where patients shared their concerns, priorities and suggestions for our work and engagement activities.\u00a0 Midway through the session, we enjoyed light catering. This break allowed time for the participants to get to know one another and enabled more personal interaction between attendees and the Pain Research Group team.<\/p>\n

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\nWhat were you trying to achieve?<\/strong><\/p>\n

We had several aims for our engagement activity.<\/p>\n

Firstly, we wanted to identify patients who would be interested in participating in the group\u2019s future research activities as patient co-designers. We envisioned this would include helping us to identify relevant and important research questions, as well as informing the way we design, conduct and share our research. We were keen that these initial workshops weren\u2019t a \u201cone-off\u201d and aimed to develop a patient partner panel to ensure longevity in our relationships with patients and the public.<\/p>\n

We were also keen to improve our communication strategy. This included reaching and engaging patient groups that are less often heard and getting feedback on the best methods for communicating with patients about our studies and the measures that we use.<\/p>\n

Lastly, we wanted to ensure our group\u2019s digital content, including our group\u2019s website, video and social media channels, were accessible, relevant and useful to our patient and public audiences.<\/p>\n


\nWho did you involve and how did you find the right people?<\/strong><\/p>\n

We used a few approaches to engage people.\u00a0 We initially thought we would advertise using a poster but then dismissed this idea as we were concerned that we might not reach the patients we were targeting; those with neuropathic pain.<\/p>\n

The Pain Research Group wrote to patients who had previously participated in their research studies and had consented to be contacted in the future. In addition, invitation letters were given to patients by the Pain Clinics at Chelsea & Westminster.\u00a0 This ensured patients with a variety of neuropathic pain conditions and patients who hadn\u2019t previously been involved in research were invited to take part in our workshops.<\/p>\n

We wanted to engage patients from diverse backgrounds and with diverse medical conditions, knowing this would add to the richness of our sessions and improve the representativeness of the feedback we received. \u00a0It was very helpful having our patient co-applicants involved in the project as they were able to advise on the best ways to share the invites and encourage people to join.<\/p>\n

In total, 18 people responded to our invitations. We then did all we could to facilitate their involvement, for example offering a choice of meeting times, catering for dietary restrictions and reimbursing for travel expenses, including taxis. We were delighted that all 18 respondents participated on the day!<\/p>\n

We wanted to ensure that the patients attending would feel comfortable taking part in group discussions during the workshops, while being confident that their privacy was being respected. We asked attendees to wear name tags (first name only) to facilitate communication and asked those who were happy to be included in photographs to sign consent forms. At the start of the session, we provided information packets that shared the aims of the session and contact details for the Pain Research Group participants. We identified a facilitator for each session who posed questions to the group and attempted to ensure all participants had the opportunity to be heard. Those researchers not facilitating the session kept notes to ensure we captured the salient points from each session.<\/p>\n


\nWere the people you involved given any training? <\/strong><\/p>\n

The Public Involvement Resource Hub<\/a> on the PERC website<\/a> was very useful for developing tools and handouts for the workshops. We started our workshops with a slide of the research cycle and used this to discuss how patients and the public might be involved in our group\u2019s work across the research cycle.<\/p>\n

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Figure of the research cycle, adapted from the National Institute for Health Research (NIHR).<\/figcaption><\/figure>\n

During the lab tours, we demonstrated our testing equipment and talked though our most common procedures.<\/p>\n


\nDid you achieve what you set out to do? <\/strong><\/p>\n

Yes! \u00a0Attendees openly shared their concerns and priorities for our group\u2019s research. They emphasised the need for research findings to be shared with patients, particularly with regards to whether\/how the findings will change anything in \u2018the real world\u2019. They also identified methods to improve our group\u2019s video and website to make them more engaging, useful and relevant to our patients. Alternate methods and routes for engaging patients in our research studies were also put forward, such as with video messages at GP surgeries and through patient support groups.<\/p>\n

What\u2019s more, all 18 of the workshop attendees have confirmed they would like to continue to be involved as patient partners in future research projects!<\/p>\n

Participant discussion was rich and informative:<\/p>\n