A different lunchtime for 4D pharma- sharing experience of Parkinson’s
4D pharma, a UK based biotechnology company, is working with a Patient Advisory Board to shape their upcoming trial. Beverley, a member of the Patient Advisory Board, joined 4D pharma at a ‘lunch & learn’ session to share her experience of living with Parkinson’s.
4D pharma is a UK based biotechnology company focused on harnessing specific strains of bacteria as potential treatments for a range of conditions. Over the last year, with support from Parkinson’s UK, 4D pharma has been working with a Patient Advisory Board to shape the development of their upcoming clinical trial for people with Parkinson’s.
The Patient Advisory Board is made up of six people with Parkinson’s. They are working together with 4D pharma to ensure that the study is meaningful, feasible and clearly communicated to people with the condition. This includes shaping the trial design and study documents.
In November 2021, Beverley, a member of the Patient Advisory Board, presented at a ‘lunch & learn’ session for 4D pharma staff to share her experience of living with Parkinson’s.
On the day
Over 40 staff from 4D pharma joined an online ‘lunch and learn’ session in their lunch hour to hear Beverley talk about living with Parkinson’s. Beverley shared her journey through diagnosis, her symptoms, the day to day experience of living with Parkinson’s and how important research is to her.
Sharing why the session was important and her experience, Beverley said:
“Thank you to 4D pharma for this opportunity to put a human face to the staff and tell them how important their work is. The audience was attentive and asked enthusiastic and penetrating questions during and at the end”
Impact of the session
Learning about Parkinson’s
The session helped increase people’s understanding of Parkinson’s.
Most of the people who attended the session worked in the laboratory or office and may not have met someone living with Parkinson’s before. It was a valuable opportunity for 4D pharma staff to hear about Parkinson’s from the perspective of someone living with the condition.
It helped them better understand the unseen symptoms of Parkinson’s and gain insight of what it is like to live with the condition on a daily basis.
“After the session I realised that I knew less information about Parkinson’s disease than I thought.” Attendee from 4D pharma
“I already had a good scientific understanding of the disease, but it helped me in connecting more with the patient’s journey.” Attendee from 4D pharma
The attendees learnt first hand about one person’s path to getting a diagnosis, her current treatment for Parkinson’s and finding ways to manage and live with Parkinson’s.
Those at the session appreciated how honestly Beverley spoke about her life with Parkinson’s — both the good days and the bad days.
“Having a patient open up about the honest struggles faced with Parkinson’s, rather than a completely “heroic” outlook, [was the most impactful part of the session].” Attendee from 4D pharma
The importance of involving people with Parkinson’s
In feedback gathered after the event, over 70% of respondents from 4D pharma said the session increased their feelings about the importance of working with people with the condition throughout the research process.
“It helped make the research feel more like working for [the benefit of] a person rather than [just]a product.” Attendee from 4D pharma
Attendees recognised the importance of getting input from people with the condition early in the development of clinical studies, and to consider the details of the trial design from the perspective of someone living with the condition.
“I will always consider the view of the patient in trial design. Are they able to complete the tasks required? Are we asking too much? Is what we are asking them to do really going to add the most value?” Attendee from 4D pharma
Increased motivation
When asked how they would apply learnings from the session into their day to day work, many people said that hearing from Beverley had increased their motivation and given them extra drive and focus to develop a new treatment for Parkinson’s.
“It gives me an extra drive knowing that the work I do could have a major positive impact on someone’s life” Attendee from 4D pharma
Reflecting on the impact of the session, Louise Markinson, Programme Development Director at 4D pharma responsible for the Parkinson’s program, said:
“Working with the Patient Advisory Board has really made a tangible difference in my daily work and I wanted the rest of 4D pharma to feel the same. I was thrilled with the response from our employees to Beverley’s presentation — so often we perform our research blinkered to the human aspects of Parkinson’s. Beverley’s presentation was inspiring to a lot of our staff and we are grateful for her time and efforts along with the other Patient Board Members”.
What’s Next?
The lunch and learn session demonstrated the importance of bringing researchers together with people with the condition to develop meaningful and relevant treatments.
4D pharma will continue to work with the Patient Advisory Board to inform and develop its ongoing and future Parkinson’s research.
4D pharma is currently planning a clinical trial expected to commence later in 2022. The trial will be investigating two new potential therapies harnessing the bacteria that live in the human gut (the microbiome). There is increasing evidence that there are important links between the gut and the brain, which could play a role in the onset, progression and potential treatment of Parkinson’s.
If your company is conducting Parkinson’s research, we’d love to speak to you about how we can support you to work with people affected by Parkinson’s.
And if you are someone affected by the condition, get in touch to find out how you can get more involved.
Email us at researchinvolvement@parkinsons.org.uk.
