How I’m pursuing research as an allied health professional
Adine Adonis is a clinical specialist physiotherapist in HTLV and neurology at Imperial College Healthcare NHS Trust. Since 2004, she’s been involved in research within the HTLV service, which is a national referring centre for this rare disease. To mark NIHR Your Path into Research month, Adine opens up about her research journey – her successes, her setbacks, and the passion that drives her to keep moving forward.
I trained in physiotherapy in South Africa before I decided to settle in the UK. Until I joined St Mary’s Hospital, I’d had a very traditional career in physiotherapy – seeing patients, running clinics, managing teams. But when I joined the Trust’s HTLV service, home to the National Centre for Human Retrovirology, led by Professor Graham Taylor, I had the chance to help recruit and eventually assess patients for research studies. I’d always wanted to do a PhD, so being a part of translational medicine galvanised me and inspired me to pursue my own research.
I was awarded a research fellowship from Imperial Health Charity’s in 2016, which allowed me to embark on a one-year research project to try to find more objective techniques to assess my patients and help them progress. This involved a lot of quantitative research with patients – I ran sessions where I invited my patients to come to a study and our conversations were wide ranging and far reaching. This led me to apply for NIHR funding specifically to develop patient engagement and we have started to explore what it is like living with HTLV and getting participants to speak openly about their care journey. It was incredibly rewarding. Without the constraints imposed by a clinic appointment, we took some time to talk about the day-to-day realities of living with an incurable disease and small changes that could make a big difference to their lives.
The experience was exhilarating and as my year came to an end, I started looking for more funding opportunities to continue my research. This led me to apply for NIHR funding specifically to develop patient engagement and we have started to explore what it is like living with HTLV and getting participants to speak openly about their care journey. It was incredibly rewarding. Without the constraints imposed by a clinic appointment, we took some time to talk about the day-to-day realities of living with an incurable disease and small changes that could make a big difference to their lives. The experience was exhilarating and as my year came to an end, I started looking for more funding opportunities to continue my research.
Pursuing fellowships, grants and funding
The funding environment is very competitive. There are clear routes into research for medics, but the path isn’t as defined for allied health professionals, which can be difficult.
I’ve also encountered challenges because I’m on this research journey later in my career. I’ve had potential funders ask explicitly why I’d waited so long to start in research, or whether I’m willing to take out a loan to fund my research. One potential funder even asked point blank why I hadn’t done all of this sooner in my career.
I was taken aback by this question: should my experience and my different path exclude me from research opportunities? I certainly don’t think so, but at times I’ve questioned my desire to pursue a PhD in the middle of my career. There have been a few setbacks that left me feeling really down.
I share all of this to offer a realistic view of a less conventional path into research. Despite those disappointments, I’ve had my share of successes and have continued to push ahead. I’ve found larger fellowships and small grants that have helped me continue my research. My path has not been linear, but mentoring, networking and reaching out to others and my research community have helped me find the right opportunities to keep my work moving forward.
Capturing patients’ voices through research
The most validating part of the whole process has been spending more time with my patients and ensuring their voices are heard. Clinic appointments are inherently transactional for practitioners and patients – we have a set period of time in which to discuss the patient’s condition and what we can do to move their care forward or improve their quality of life. But at my research sessions, patients felt more comfortable opening up. I focused on qualitative research to supplement quantitative questions, and I learned a lot about the value of active listening. Outside of their clinic appointments, my patients are much more comfortable explaining why they often struggle to put clinical advice into practice and what we can do to help. Our sessions have clarified the challenges they face and helped us understand how we can better support them to live healthier lives.
For the past 10 months we have been conducting a series of engagement workshops to explore what people’s experiences were living with HTLV-1, what issues they wanted to focus on and what they wanted from healthcare providers. This work has been funded through an NIHR fellowship. The overwhelming message from the participants is that this is the start of the conversation, not the end, and that meeting up with others who have HTLV-1 had many benefits including making people feel less isolated.
I’d encourage anyone who is interested in research to press ahead, even if you run up against roadblocks. You may need additional support and mentorship to help you get through, especially if you aren’t following the traditional medic’s pathway. But it is absolutely worth it if you can use your research to give your patients a voice.
Find out more about how the NIHR supports professionals to pursue research, use #YourPathInResearch to share this story and contact your local research leads to find out how you can get involved in research in your area.