Jeannine Joseph is a patient in the Guy’s and St Thomas’ Sickle Cell Team, who from a young age has advocated and educated people about sickle cell disease, to help spread awareness and improve patient care.
For the last four years Jeannine has worked with the Guy’s and St Thomas’ sickle team as a patient expert, using her insight and knowledge to help inform research direction and healthcare practice.
One of the most recent projects she has been involved in is TAPS2, a NIHR-funded feasibility trial led by Professor Eugene Oteng-Ntim at Guy’s and St Thomas’. The study aims to establish how effective a treatment called Serial Prophylactic Exchange Blood Transfusion is for improving women’s and babies’ health in pregnant women with sickle cell disease.
TAPS2 is a feasibility study, so the results of this trial will be looked at with the aim of carrying out the bigger ‘definitive’ trial, which will then collect sufficient information to demonstrate if having regular exchange blood transfusions helps women and their babies remain healthier throughout the pregnancy.
We asked Jeannine about her experience of being involved in research, and why she finds it so important and worthwhile.
Can you tell us what a patient expert is and how you first became involved?
I have been a patient expert with Guy’s and St Thomas’ for about four years now. I have been educating and spreading awareness about sickle cell since I was 15, but since working with the sickle team I have been able to reach more people, most importantly NHS staff. Since officially becoming a patient expert, it’s been easier for me to become involved as a patient in projects I find important. Nurses, doctors and psychologists know that they can come to me for a patient perspective or my involvement. One of the first things I got involved in was staff study days for sickle-cell, helping clinical staff understand what it is like to be a sickle patient and how that can influence their methods of care. More recently I’ve become involved in the TAPS2 trial.
What was your involvement as a patient expert in the shaping of the TAPS2 trial?
As part of the TAPS2 trial I am working with the clinicians to make the trial more accessible to patients. Examples of my input include suggesting support for participants such as transportation and childcare. I also help to make sure that participants have all the information they need and are able to understand it. One example is my involvement in developing the TAPS2 FAQ web page which covers questions from ‘what is sickle cell disease’, to how to contact the TAPS2 team. Sharing and having my opinions listened to not only means that participants will have a better experience during the trial, but enables more patients to take part and ultimately get better treatment outcomes after the trial has finished.
How does it feel for you to be part of the research narrative?
I think as a sickle cell patient it is important for me to get involved in my community as much as possible. My experience so far has led me to be part of research projects, study days and conferences. These methods allow us to raise awareness and education for sickle cell, and directly lead to improving treatments and care outcomes for patients.
Do you think it’s important for sickle patients, especially women and pregnant women, to be involved in sickle cell research?
This research project caught my eye as I have never heard about a trial being specifically done for pregnancy in sickle women. With greater involvement from sickle cell patients we could have a say in what the healthcare system can provide for us, but also to improve the healthcare system and treatments available to patients and their children.
Do you have a message for any patients who might be hesitant in getting involved in sickle cell research?
By involving patients, researchers can get a better understanding of our point of view, what’s important to us, and how we live with sickle cell disease. I believe this makes it easier for researchers to tailor the project/trial to the patient group, and hopefully result in increased number of participants and more meaningful data. The more engagement we give as patients to trials such as this one, the more we can increase the quality and number of trials, and further the education of sickle cell not just for the patients but also for the people that provide us care.
Jeannine’s presentation about her experience of sickle cell disease was part of the Elements and advances in Sickle Cell Care virtual conference on 11-12 Oct 2021.
Women interested in taking part in TAPS2 can contact us on Taps2@gstt.nhs.uk or by calling 020 7188 3634.
The TAPS2 study is supported by the NIHR Research for Patient Benefit Programme.