In conversation with: James E Moore Jr., Principal Investigator; Alain Vella, Research Engineer; and Arushri Swarup, Research Associate, from the Moore Research Group in the Department of Bioengineering, Imperial College London
What is your research project about and what stage are you at?
We have developed an implant to prevent the onset of breast cancer-related lymphoedema (BCRL). BCRL is an under-represented condition that can occur following lymph node removal for the treatment of breast cancer. When lymph nodes are removed, lymphatic vessels (small vessels that transport fluid out of tissues) are damaged. In approximately 20% of patients this can lead to fluid build-up resulting in a swollen, heavy arm negatively impacting patients’ physical and mental health. We are developing an implant that will heal these injured lymphatic vessels to prevent BCRL. Currently, we are fundraising to conduct preclinical studies to test the device’s performance before we start clinical trials. Our ongoing discussions with patients helped identify the need for an easy-to-implant prevention device and informed our design process.
What did you want patients/the public to help you with?
We wanted to work with patients to fully understand the ways in which BCRL has impacted their lives. We also asked them if had they known they would get BCRL, would they have consented to receiving an implant at the time of surgery to prevent it? We learned from women we spoke to that not all women are warned that lymphoedema is a side effect of cancer treatment. Some women were told but when voicing concern were told not to worry about it. We also learned that not many people are aware of this condition, and that it is often overlooked by society and not always well understood by medical professionals. This motivated us to not only to develop a medical device for prevention, but also to make an awareness film to educate the public and research funders of the impact of lymphoedema on people’s lives.
Who did you involve and how did you find them?
We collaborated with Breast Consultant, Mr Paul Thiruchelvam, Imperial College Healthcare NHS Trust, who operates on breast cancer patients. He is very aware of the risk of BCRL and is active in developing ways to prevent it. He put us in contact with three BCRL patients who are active in the patient awareness community. We also collaborated with Kelly Gleason, Imperial CRUK Senior Research Nurse and Patient and Public Involvement and Engagement Co-Lead, who leads public involvement in the Surgery & Cancer Theme of the Imperial Biomedical Research Centre. Kelly connected us with three more BCRL patients who were eager to be involved in the research and be part of the awareness film. These six patients are from diverse backgrounds, and reside in various areas of London, thus have experienced different levels of care. Hearing their stories helped us understand the importance of making the device low-cost and easy-to-use, thus accessible to everyone receiving treatment to prevent all cases.
What kind of activity did you undertake to gain insights about your research from public contributors?
We held three annual discussion group meetings, where we provided a safe space for patients to comfortably share their experiences. Professor Moore met the patients before-hand and ensured either Paul or Kelly attended to make sure patients knew at least two people in the (virtual) room. He introduced the research team to the patients and invited them to participate in informal discussions such that they could freely share their experiences to whatever degree they felt comfortable. We started meeting virtually during the COVID-19 pandemic and moved to meeting in person in 2022. Each meeting starts with a presentation of our current research, where we encourage the patient group to stop us whenever they would like to share their comments and/or ask questions. We let the meeting flow naturally as a conversation and took notes as feedback data. Meetings typically last one to two hours, depending on the discussion.
During meeting one, we asked patients if they would want a device to prevent BCRL had they known it was a risk post breast cancer treatment. They have all said yes, and they wished there was more warning when they were diagnosed. We also presented results from a meta-analysis where we determined risk of developing BCRL post breast cancer treatment. Patients commented on the fact that they had received the treatments that led to high risk of BCRL but were not warned adequately about the effects of BCRL. This stemmed a discussion about how to raise awareness. Kelly suggested a visual advertisement-like campaign to share patient stories with the public and potential funders. Kelly applied and was successful in receiving a Participatory Research Seed Fund Award from the Societal Engagement Team at Imperial to film two videos to raise awareness and highlight the value of co-production. The CRUK Convergence Centre and NIHR Invention for Innovation (i4i) grant in Bioengineering further supported the work. Every meeting, we took meeting minutes and at the next meeting, we presented answers to their questions from previous discussions to make sure they knew we were listening, and we care.
Was any training/briefing provided to the people you involved?
No project-specific training or briefing was provided beyond a general introduction to public involvement. We guided the session by introducing our research and development efforts on lymphoedema but wanted the sessions to feel like a natural two-way exchange of information. We encouraged the patients to speak freely on their experiences. We prepared a few questions on which we needed their insight, and this often sparked further useful feedback.
How did your research change as result of the public involvement insights?
The public involvement helped us meet significant milestones in our project plan. We ascertained the need for prevention of BCRL and the patients’ willingness to have the device implanted if it meant they would not have developed this condition. We gave patients prototypes to take home, and they were encouraged by the small size, and the soft structure. We received patient input on what sort of success rate they would want to see in clinical trials. The patient group agreed to participate in an awareness campaign, and this led to a beautiful set of videos of the patients candidly speaking about how BCRL has affected their lives. The impact of these videos is greater than anything we imagined, and certainly went above and beyond the expectations of our project deliverables. The main takeaways from these interactions are quotes from patients that provide evidence that this technology is addressing a real patient need. We use these quotes in our pitch decks for future investment, and our grant applications. We believe these are crucial in providing legitimacy for our device.
What impact did the Public Involvement have on the people involved?
The impact of public involvement is captured in the awareness and co-designed videos. A skilled videographer who previously worked with Kelly was engaged to direct the film. Before filming, he spoke to the team, and Kelly, and the patients to gauge the message we wanted the videos to portray. He then worked with Kelly to setup a space for filming where she was present the whole time to make sure the patients felt okay. He sensitively asked patients questions on camera and produced draft cuts for the team and patients to review. Kelly reached out to the patient group separately to provide care and get their feedback on the videos. We will distribute the videos through lymphatic awareness groups and hope that the public and clinicians will realise the extent to which lymphoedema affects patients’ lives. It is clear that patients want their voices to be heard and are very grateful that they shared their experiences to benefit future patients.
What was the most challenging part of doing Public Involvement and how did you overcome it (or not)?
The most challenging part was learning that patients need more care, especially when it comes to public involvement. While the patients found it useful to share their experiences with each other, it did force them to think about their condition more than a usual day. We are lucky that Kelly is part of our team and was able to provide the follow up care that is necessary after the patients have been vulnerable in front of researchers and a film crew.
What advice would you give other researchers interested in doing something like this?
Get patients involved as soon as you have identified an unmet medical need. This will validate the need for a solution and uncover many nuances that only the patient perspective can provide. Identify the patient population you want to approach, and engage a patient liaison, such as a nurse, to contact patients and facilitate any interactions. It is imperative that patients are communicated with extreme care, and engaging a facilitator who has been trained to care for patients will ensure the process is smooth. Make a safe space for patients, remember they are people and require compassion and they are doing you a favour by being involved. Lastly, during the engagement activity, make an agenda to help guide the discussion but do not shut down/cut off any patients who are speaking to keep the environment welcoming and safe.
So, what’s next?
We will continue to have patient discussion groups and hope to recruit more patients from diverse backgrounds all around the UK to participate. We will continue to present our progress to these patients and welcome any feedback they have. The aim of the patient awareness videos is to raise awareness for lymphoedema to reduce barriers to attracting more funding for this project so that the implant can eventually reach patients and achieve impact.
If you would like to learn more about our research and public involvement, attend our free lymphoedema science café on Wednesday 22 November 2023, 18:30 – 20:00 at Maggie’s West London (Charing Cross Hospital, Fulham Palace Road, London, W6 8RF). Light refreshments will be provided and registration is not required, just turn up. If you have any questions, please contact Kelly Gleason.