The Benefits Of Volunteering For Medical Research - Victoria Bartle

 

Taking part in medical research can be beneficial to both yourself and wider society.


In 2016 I had to stop working due to my deteriorating health conditions. This was a huge change for me and I struggled to come to terms with my move from being an active, successful, independent woman, to someone reliant on disability benefits and support from family, friends and carers.. Despite the challenges, I desperately wanted to do something to keep my mind working, to meet new people in similar situations and also to feel as if I was still being a useful member of society even though I wasn’t able to work. 


Why volunteer?


Volunteering seemed to be the obvious choice to me, and, in the current climate, with lots of people being furloughed or facing redundancy due to the effects of the pandemic, I think it probably something that many people can receive help from in terms of health and wellbeing as well as adding something worthwhile to your CV. 


Gaps in a CV are never ideal, but if you’ve managed to busy yourself, learn new skills and increase your personal network by volunteering in lieu of, or alongside paid employment it’s going to help you in the long term. Recruiters will understand the employment challenges people are facing at the moment, however, seeing volunteering activity on your CV shows your work ethic and drive. This can therefore, improve your future job prospects and, you never know, the people and companies that you come into contact with through voluntary work might just have paid employment available further down the line. Volunteering is also useful for maintains a routine and a mindset of working to minimise any readjustment problems when you do find new employment. 


From personal experience, I can confidently say that the benefits that volunteering has on your mental health alone are huge. The volunteering that I do really makes me feel useful, as if I have something valid to contribute, and it boosts my self-confidence as I am able to interact with people and contribute to important projects that I wouldn’t otherwise have the opportunity to do. Other personal benefits from volunteering include developing new skills and meeting new friends.


Voluntary work in the medical sector


Due to my earlier role as a recruitment advisor, I knew that there were lots of different volunteering opportunities out there other than the obvious ones such as working in a charity shop. However, I hadn’t really considered that volunteering might also include taking part in medical research. When I learnt of the opportunity, it at once interested me due to my personal circumstances and recent experiences relating to my own medical conditions. Through these experiences I became aware of areas for improvement in terms of treatments for those of us with multiple, long-term incurable conditions. As someone who knows just how dramatically these conditions can affect our quality of life I felt that I could offer valuable lived experience by getting involved in medical research. 


The first thing that I learnt is that in the world of medical research, PPI stands for Public and Patient Involvement (you’d be forgiven for immediately thinking of- mis-sold financial insurance!) In research, PPI is a vital element of every proposal and researchers should always endeavor to include the opinions of, and ideas from, the general public and those with relevant lived experience. This is to prove that investigations are informed, relevant and able to show potential benefits to society. anyone can get involved in – regardless of age, background, ethnicity and  location. There are lots of different things to do and ways to take part, it’s most definitely not just about being a medical guinea pig!


My experience as a volunteer


My first step into volunteering as I was reducing my hours at work was to become a Health Champion for the Fatigue Clinic that I attend. This led to me meeting new friends who introduced me to wider medical research activities, PPI and the variety of projects that I could take part in. 


Three years ago, I became a member of the Voice research support group.. We have regular monthly meetings where I am able to supply feedback to researchers to   help direct and positively affect their projects. It was, and still is, an important part of my life and it has led to me becoming involved in a few other projects and deciding to volunteer as a Research Champion for my local Clinical Research Network - Northeast and Cumbria. As a Research Champion not only do I take part in projects, but I also promote the benefits of getting involved in health research to others too. In doing this, I talk not just of the benefits of the research itself, but also of the personal benefits of taking part – for example being able to use the skills that I still have, but on my own terms and in my own time. 


Since becoming a research champion I’ve been invited to webinars and zoom meetings to discuss specific studies, provided PPI opinions for a couple of research projects and have become a co-applicant on a new proposal which has just been awarded funding and will be going ahead in the new year (this proposal is called ‘ADMISSION - researching ‘in hospital’ experiences of people with multiple long-term conditions’). I’ve also took part in a national strategy group with various medical and research professionals who are looking at how to direct future research into multiple long-term conditions, (both of which fall under the umbrella of the NIHR plans for research into multiple long-term conditions). The lockdown has meant that I’ve been able to take part in projects virtually that I wouldn’t have been able to attend in real life due to the travel involved in going to meetings in person which I often struggle with due to my conditions. I can attend a national or even international meeting from my sofa in my PJ’s which makes it much more accessible for me and lets me get involved in projects outside of the Northeast.


The opportunities on the Voice website are just as varied as the research projects themselves. I’ve completed online questionnaires on a number of subjects, from my opinions on rest areas in public spaces, my feelings towards automated medical screening machines and where they should be found, to the use of artificial intelligence in surgery. One of the most interesting things that I did through Voice, was a session with pharmaceutical students who were studying polypharmacy (the effects of taking multiple medications). They wanted members of the public to talk to them about their experiences of this. I thoroughly enjoyed the session and felt as if I was playing a role in the education of our future chemists, as they were all very engaged, asking relevant questions and genuinely interested in speaking to me as an actual patient about my real experiences instead of learning about it purely in theoretical.


In 2019, I was part of a group that helped to design and deliver a conference for professionals working with patients with chronic fatigue. I spoke from a patient’s perspective which was personally very emotional and empowering, but also beneficial to the attendees who were able to hear directly from someone who has lived with chronic fatigue for several years. I was able to share how I manage it, the support and interventions that I’ve had over the years and how these have improved thanks to increased research, awareness and understanding of chronic fatigue. This gave me experience of being part of a team for the first time since leaving work, the opportunity to voice my opinions and also to develop my speaking skills.


This year I have taken part in a regular covid research questionnaire looking at how people are coping both mentally and physically during lockdown. This has explored how we cope with the restrictions, the constant changes to the rules and our understanding of how to stay safe during the pandemic. I have also been logging my symptoms daily on the Zoe covid symptom tracker app. which has supplied lots of data for the government and researchers to help develop a better understanding of the virus and its impact. 


I am also part of the PPI group attached to a trial that looks at the effect of pramipexole (a drug that is currently used for Parkinson’s symptoms) on bipolar disorder.. This trial began enrolling patients just before the start of the pandemic, and it was then put on hold while we revised the processes to ensure they were Covid-safe and inclusive and has recently started recruiting again. This is the most challenging project that I’m involved in. The trial is very complicated, and the language used has been difficult for me to get my head around, but I’ve asked questions, rewritten patient documents so that I can understand them and, hopefully, the newer recruits for the trial will be able to as well. I’ve also taken part in practice calls with the research administrators who speak to the volunteer patients throughout the trial. Through this, I’ve felt as if I’ve been able to improve their experiences as well as constantly supplying a patient voice to help simplify the information patients will receive, inform how it is delivered and how their experiences whilst taking the drug will be checked. I’ve thoroughly enjoyed the challenge and am really looking forward to seeing the results and continuing to make adjustments throughout the trial.


I feel that my voice is always listened to and respected even though I am a lay person, and this reassures me when I  feel out of my depth in some of these meetings. My professional experience is in retail, leisure and advice management and, although I am used to working with people from a variety of backgrounds, it can be a little intimidating meeting with lots of doctors, professors and PHD students. I try to make notes, listen and ask questions, and this is exactly what they are looking for - a lay person’s opinion. I can, for example, ask questions that may seem obvious to me, but that a researcher with no lived experience might not have considered People from a scientific background are taught to write, think and process information in a certain way and having an external viewpoint is exactly what they are looking for in a PPI voice. I feel that my questions, opinions, advice and editing (of plain English summaries and patient information) has been essential in making the projects ‘user friendly’, patient-centred and relevant, which is surely what we all want from medical research in order to improve the support, treatments, interventions and care in all of our medical and support services.


How to get involved in medical research.


There are a number of ways you can get involved in addition to the groups, websites and apps that I’ve already mentioned:


  • Your GP surgery may have a patient group. that you can join to inform decisions made about healthcare in your local area. 

  • The NIHR has a number of ways you can get involved., whether that be taking part in research projects, joining funding committees, becoming a research champion or reviewing documents and finding out more information about their current areas of research. 

  • The Be Part of Research website has lots of information about current projects and criteria for involvement and it is easily searchable so you you can find things that interest you personally. 

  • If medical research isn’t for you then the Charity Job website advertises paid roles with charities as well as a huge variety of volunteering opportunities from fundraising to social media management, bid writing to being a trustee and everything in between.


I take a lot of pride in the projects that I am involved with, and in all of the work that I listen to, question and supply feedback on as I know that it is all contributing. towards improving the care and support that we all receive from our healthcare services. I love being able to participate in things since I had to stop working, as it makes me feel useful, relevant and as if I am being of benefit to society in some small way. There is so much more involved than I initially expected, and I am able to find opportunities that relate to my own areas of interest and my personal experiences. My earlier work and life experiences all add to my ability to be an effective research champion and PPI member, and I’m looking forward to more involvement in the future, for my own wellbeing as well as to diversify my skill set, enhance my CV and help me develop an employment plan for the future. 


I think that people are currently more aware of the value of medical research due to covid and the publicity around the need to research symptoms, treatments, effects and vaccines.  I hope that many people get to see the variety of research being undertaken, stay involved and progress onto other projects, thus supplying a much broader PPI perspective which will have a huge benefit to the quality, diversity and accuracy of future research projects. 


If you're thinking that it sounds as if I do a lot and you wouldn’t have the time or the energy to do this much, then remember that my experiences have taken place over several years. I only tend to do about two or three hours a month which I can fit around my other commitments, and I’ve been able to slowly increase this from the one hour a month that I started with as my health has been improving. 


There really are so many opportunities to do as much or as little as you like, and it could start with simply completing a few online questionnaires which might only take you about half an hour. Every little helps and, no matter how small a contribution you think you’re making, it plays an incredibly significant role in the future health and wellbeing of all of us.