Why is PPIE especially important for underrepresented groups?

By Jeannine Joseph on 23 October 2023 RCM UK Research Safety Women

Jeannine Joseph shares her experience living with Sickle Cell and how taking part in research has given her hope for change when it comes to patient and public involvement and engagement (PPIE) for underrepresented groups.

Living with Sickle Cell (SC), I’ve had to educate and spread awareness my whole life, which started with my parents. When my mother was pregnant with me, my parents were told they might as well terminate because I won’t live past 10 years old. This attitude from HCP didn’t change whilst growing up, I was called a liar as a child because they couldn’t/wouldn't believe that I was in so much pain, needing to be in hospital so regularly.

My parents had to fight for me to get adequate treatment and to be treated without animosity. I thought my experiences would become better and easier as an adult but it continued, being labelled a liar, drug seeker, and aggressive. I admit that things are gradually getting better, but bad experiences are still occurring to plenty of SC patients using the health care system and hearing these negative words and statements. Ultimately, there is still a lot of improvement that needs to be made with how HCPs relate to SC patients.

I’m passionate about improving the healthcare experiences for people with SC, speaking often about living with SC, the treatments and experiences using the health care system. I feel we’ve especially been forgotten since the discovery of the treatment Hydroxycarbamide. Yet there are many other aspects to having all rounded better treatment and quality of life for SC patients.

We’ve had to fight for psychologists on the sickle team to help support with how SC impacts daily living, Welfare Support to help with access to benefits, and now we’re asking to have the care outlined in the NICE guidelines as unfortunately people have lost their lives still waiting for the medical attention. These are basic things other genetic diseases don’t have to do, and examples of some inequalities people with SC face.

At the start of COVID I met a research midwife who informed me about the study she was currently working on which was TAPS2. One day she asked if I’d be interested working with the team as a PPIE representative.

I wasn’t sure what it would entail or what I would be expected to know but I knew that I wanted to work on this despite my worries, because this was one of few research studies that are trying to improve treatments and experiences specifically for women with SC. I felt that it was important for me to take the opportunity to try and make a difference from the start, instead of us fighting back later down the line. 

The TAPS team is passionate about improving care for people living with SC making sure the research is done following the proper guidelines. In addition, actively trying to be better for their patients and showed me the inequality and racism directly from researchers is no more.

The team addressed my opinions and thoughts seriously. I realised the importance of having a patient perspective during research for groups like SC. I am an expert at living with SC and using the health care system as a patient. I have many experiences that researchers wouldn’t think about, how that effects patients, how we interact and trust the health care system that we rely on. I’ve seen the effect that my opinions and suggestions have had on the study and it’s exciting to experience this first hand. 

Illnesses like SC effect a relatively small part of the population, mostly effecting people from African and Caribbean backgrounds. We have experienced discrimination, racism, mistreatment, hurtful and harmful judgment and only we can speak on our experiences. It is important we are heard, especially when it comes to research as we could end up relying on outcomes that we don’t deem important.

All projects should include PPIE patient experiences which are important to the outcomes of research studies. Research is one way we can try to achieve better health by working to improve outcomes in the NHS. If your wondering about taking part in research, have some experience in or passionate about, I would recommend it!