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Today is International Clinical Trials Day. Patricia Logullo talks about her experience as both a trials participant and researcher

I am extremely grateful for the excellent health I have and have always wanted to give back at least a little. Initially, I found that donating blood was a nice way to do that, sharing my good health and fortune with others, and I have donated several times a year since 1996. Previously, I lived in Brazil, where I worked as a science editor and medical writer. There I sometimes volunteered for charities and medical associations. However, I had to run my consultancy company and was not able to attend regularly (serving meals, organising libraries or caring for the elderly, for example). But I realised that there was another way I could help.

When I started my PhD in Brazil, I saw I could not only volunteer for charities or assistance, but also for health research — a field I was passionate about, but which has few employment opportunities for non-medical professionals in Brazil.

I found that even someone in good health was useful for the studies, and that I did not have to have disabilities or be sick to be part of a research project. I started to get involved in the “control” arm of observational studies as a healthy participant. I already knew how difficult it is to recruit participants for research because I had experience with my master’s degree and my PhD projects. So, I volunteered as much as I could, and still help fellow researchers now.

These experiences go beyond pure philanthropy: I realised that they help me as a researcher too because they put me in contact with other researchers, their projects and challenges. When I sit there to give blood, skin or to be examined, I always try to talk with the investigators and learn more about their projects — respecting confidentiality issues, of course. When I moved to Oxford in 2018, to work as a researcher, I did not stop. Instead, volunteering helped me understand how the health system works here in the UK and the incredible availability of resources in our University.

From every experience as a volunteer, I can take useful lessons for my personal and professional life as a researcher and communicator. For example, in Brazil, I participated in a study on hormonal levels and fat deposits in women. As part of this, I had my anthropometric measures, including body composition analysed in a funny machine (a bioelectrical impedance machine) and gave blood. Although not overweight, I received some tips for a healthy diet: we can always learn a bit more, can’t we? The most important lesson I took from this experience was the importance of providing complete and clear information to participants ahead of time: I had not fasted prior to giving blood and because of that, I had to come back later to provide a blood sample while fasting. This lack of information could have resulted in participant loss for the researchers (if I hadn’t been willing to return).

Here in Oxford, I volunteered for a study on body composition again, now using a dual-energy x-ray absorptiometry machine (and yes, I am fully convinced I need more aerobic exercise!). Both studies allowed me to take a more objective view of my body. During the measurements, my conversation with the researcher helped me get more realistic expectations about my looks: age and hormones play some role too, I learned, and to get a bit more relaxed about my waist circumference. Not much, though!  How many times in life do we have the opportunity to talk to specialists when we're not experiencing health problems?

Sometimes, volunteering can take more of your time. I took part in a study about the sensation of being short of breath: I had to blow on tubes of different diameters or filters for more than an hour and tell the researcher how difficult it was each time. For a mother of an asthmatic daughter, this was a revelatory experience: I could feel just how difficult being short of breath can be — and how subjective these sensations, and measurements, are. It is a real challenge for pneumologists who investigate this, and I was glad to see the researcher taking so much care with the details.

That was a physically engaging study, but other projects try to improve the objectivity of assessing human behaviour. A colleague of mine was evaluating the accuracy of pedometers and other devices designed to measure exercise activity. I volunteered to help in his project by using two devices for 24 hours and a camera recording my activity for an hour. I was embarrassed to discover just how little I walked in that single hour… and this was before the 'work from home' pandemic era! Now I wear a watch that reminds me to stand up every hour.

Some studies can be a little more invasive too. In a study dealing with neuropathic pain on arms, hands and feet, I volunteered for a neurological evaluation. This involved questionnaires and blood samples, but also something else: testing my sense of touch (differentiating between hot and cold, for example) and included taking a small biopsy from my finger. It was so pleasant to talk to the researcher. I learned how she was conducting the project, why and how she measured things and how, in the end, it may benefit patients who currently suffer from chronic pain, with little prospect of improvement. She was very careful not to hurt me too much, and I could type normally the next day.

The conversations we had between assessments also allowed me to tell her about our work with reporting guidelines and research integrity in the EQUATOR Network — which she did not know about. I was happy to share our experience in high quality reporting with one more researcher out there.

Science festivals also give me an opportunity to share my experience. I went as a volunteer for our department: talking to children and their families about science and how research is produced and also the concepts of research integrity and good reporting. This is the field I work with as part of the EQUATOR Network. The contact with the public and with other researchers is always enriching.

I also helped, this time not as a subject, but as a citizen participant, with patient and public involvement (PPI) in research. This experience was very different and innovative for me. Nobody was testing me, measuring me or taking my blood. Instead, they wanted me to talk and express my opinions. about blood loss, blood donations and the concerns of people undergoing surgery, regarding the risk of anaemia, bleeding and fatigue. I could contribute both as someone who has undergone surgery before and someone who donates blood regularly, and I could also review the patient consent forms for the study. I could see the study issues and express myself from a different perspective to that of a researcher or of a study subject. I had never had any experience PPI before, and I realised how much it could help in research.

More recently, I participated in several surveys to help decide core outcome measures in research for, say, urinary tract infection: what are the essential symptoms to assess among trial participants? I believed they were missing some and recommended that the researchers add them. Core outcomes were also a new wonder for me as a researcher: letting the patient decide what is important, discovering how patients express themselves and refer to symptoms and finding out more about the consequences of disease for their lives.

How clearly are we talking to patients? How much are we letting them participate in research, other than as patients or controls? How much are we considering their views on what is important to study? How severe (and what) are the side effects that they agree to negotiate when included in clinical trials? How much are we listening to them regarding their daily routine with the disease?

This journey of mine as a research volunteer, and as a researcher, I hope, is just beginning, but it is already so rich in questions.

 

Patricia Logullo

 

OPEN ARMS, the Oxford Patient Engagement Network for Arthritis and MusculoSkeletal conditions, is a new PPI group within NDORMS working with patients, their families, and carers. For more information please see our OPEN ARMS website.