In Part 2 of our wrap on a workshop we held at the NSW Patient Experience Symposium (#PExS2018, Part 1 available here), we share the perpectives of someone that has contributed his experience as a patient working with researchers.
Fabian Marsden has lived with chronic kidney disease for decades. He has been called a ‘frequently flyer’ of the health service, having had over 50 surgical interventions, including two kidney transplants, and long periods of dialysis in the past. Over the years, Fabian sought out opportunities to make some kind of contribution to the health system that has supported him so well for so long. Fabian shared some of that journey into being a consumer representative to research with workshop attendees. A few of Fabian’s observations are noted below:
- As someone living with kidney disease, he was constantly challenged managing his fatigue and full-time work. The tension was not in not being well, but rather in ‘acting well’.
- The issues that matter to patients, carers and others involved at that level (like fatigue, and rigorous appointment schedules), are just not on the radar of hospital and medical service providers. There is a desperate need for patient input to drive government strategy, hospital policy and especially research, with patients as competent inputters into the process.
- Good patient-focussed research can simply lead to a better experience for many. Hard data comes out of research, but more patient focussed outcomes are now included in the research. As an example, fatigue and quality of life issues are now on the renal research agenda.
- When he first started as a consumer representative on the scientific committee of the Australasian Kidney Trials Network, he didn’t know what to expect and whether he would cope with the reading etc. He developed the view that he should be a participant and active observer. He felt his role could be to look for the linkages with other groups, gospelise the value of the particular research, and assist the trial to meet government expectations. He would have meaningful engagement with consumers, which builds capacity for the scientific group’s training, and for generating more research funds, which is critically important.
- Researchers were generally welcoming and supportive on the scientific committee, although there are pockets of resistance to consumer involvement at that level. Consumers need to be able to read well and follow through with a clear understanding of what is happening in the research. Not everybody fits that particular bill. Having said that, there are opportunities for every type of person to be involved at different stages of the research.
- At the scientific committee level, you need to have an objective understanding of the research process, else it won’t work. This means you need to prepare, ask questions, and look independently at the trial processes.
- For effective involvement with researchers, you need commitment, determination and a curiosity to understand. That means education, and support from your network. It can be a challenge, it takes time, and is at times difficult. You feel sometimes like you are sinking in a sea of acronymns, and a healthcare service that is gigantic. You wonder if change is ever going to happen.
- One of the greatest learning tools is to ask the dumb question. No matter who is there, doctors, nurses, etc, there is always someone else in the room that wanted to ask that question. It’s a good way of clearing things up.
- It’s a good feeling to be part of a process that leads to far reaching benefits for patients. It was a challenge giving time to the job given other competing interests. But it is rewarding, Fabian will continue, and would do it again. It takes time, effort, frustration and willpower to find your way through to adding value, but it is a worthwhile process so please pick up the batton and run with it.
- Bad trial designs do happen. Research groups need continual advisory committees, oversight, sometimes it doesn’t happen – we are human. Fabian doesn’t believe patients always have to be involved directly in research design, but does believe there should be patient oversight involved in every trial advisory committtee.
- Despite all his healthcare experience and multiple contacts with the health service, Fabian was never invited to engage in a research opportunity by either a hospital or a doctor unless he initiated it. He thinks this is starting to be addressed due to an acute need for patients to be involved in research opportunities, driven by funders.
- More people need to put up their hand to be involved in research, but rarely do the worlds of patients and researchers connect. There needs to be something that brings those two groups together.
- Why don’t more patients get asked by researchers to be involved? Fabian doesn’t think researcher fear is the reason. Rather, he acknowledges that everyone works to work routines, and not everyone is up to date on everything that is available. Hospitals, doctors and research just do not come together. An opportunity to bridge this gap would be to increase communication about research in doctor information services. For example, Fabian receives a weekly email for GPs with 6 points of practice GPs need to be updated on that can be read in 45seconds. He suggests if messages about research were dropped in there on a regular basis, then research is more likely to pop into doctors heads. They will be more aware, and they will be able to connect with patients that could possibly be involved.
We would like to thank Fabian for sharing his experiences, insights and call to action for more of the public, patients and carers to put up their hand to start working with researchers. Importantly, thankyou for agreeing to make available this unplanned video of the presentation, so that others could learn from your experience.
If you are interesting in learning more about how you can get involved in medical research in a meaningful way, join our Research Gamechangers Facebook group and start asking questions, sharing experiences and connecting with others like you
Related:
PExS2018 Part 1: Experiences Being In a Trial
PExS2018 Part 3 (Final): Getting Patients and Researchers Working Together (coming)
