Participating in scientific research offers numerous compelling reasons, benefiting both individuals and society at large.
Research plays a pivotal role in advancing knowledge and addressing global challenges, such as developing medical breakthroughs, driving technological innovations, and informing public policy.
On a personal level, the sense of achievement and fulfillment derived from contributing to meaningful discoveries and being part of a collaborative scientific community can be immensely rewarding.
So...we want to know...What motivated you or someone you know to participate in scientific research?
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AnnaHU
HealthUnlocked
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My story contains no meds then Stroke with rapid and persistent AF AND Thyroid Cancer discovered via a carotid arteries scan still on hospital in day 4.
A journey to find a heart specialist who was interested in me and what meds suitable.
I got an invitation to the Gallieri (sp?) Trial that ran (is still running in some parts of the country). The aim was to find blood markers for early detection of cancer. Something close to most people's hearts particularly mine as i lost my mum to cancer aged 56. It was a no brainer for me to give blood for this cause once a year for 3 years although the first venue was a long way from home and really difficult to find! The next 2 venues were on home turf so to speak. It would have been good to know more and I hope they learn a lot from the trial. I have huge respect for those who trial new drugs.
In 2014 I had pulmonary toxicity (aka cryptogenic organising pnuemonia) caused by dronedarone and amiodarone. It's rare, affecting 6 in 100,000 people. Four of those will die, one will have a lung transplant, and one will be confined to a wheelchair and be on oxygen. My outcome was better. The clinical team asked if they could write a paper about my case: in 2015 it became Case of the Quarter for the Royal College of Physicians of Edinburgh. That was the starting point. A condition that could kill you, that clinicians confused with community aquired pnuemonia and therefore used the wrong medication (it was the third hospital admissions and being hypoxic that correctly diagnosed it, thanks to Professor Anne Millar).
In 2016 I had a stroke related to AF and doing inverted yoga poses after a hard gym workout. My rehabilitation was ten minutes walking along a straight hospital corridor, being told to scanned to my right as I had lost part of my peripheral vision. The permanent defective vision resulted in my driving licence being revoked. DVLA were refusing to provide time for refresher lessons for a disability driving assessment (prior to February 2020), and in researching appropriate evidence, I contacted Professor Fiona Rowe of Liverpool University. That led to being a stroke lived-experience person for some of their studies. I couldn't have contacted a better university for stroke related homonymous hemianopia, and caring people.
The local Primary Care Practice asked if would talk to Bristol University medical students about stroke. I then became involved in studies through Bristol Health Integration Team and the Stroke Association. Zoom sessions with other stroke lived-experience people and carers revealed how little support there was.
My past and present involvement is with twelve universities. Zoom essions chaired by Trudie Lobban, and being listed as a patient representative in a paper by Bristol University for NICE. It's not only the satisfaction of helping, but learning too. For example, about the variations to the CYP2C19 enzyme that metabolises drugs in common use, and explains why we have differing reactions to medication. It's really important that we as lived-experience people engage with studies and, even the OurFuture Health study.
I've taken part in Dementia research mainly, I had people in family who had it. I wanted to help further research for others, and in one research opportunity I had my DNA tested which showed there was now familial link with me, which was a huge relief! I like to see the results of the research, even if it does take time to come through, as its good to see what the scientists can do to help with this condition. I'd personally like to see more research on people who have side effects with medication, but sadly I don't think Drug companies are interested....
I have always said yes to any suggestion or request to participate in research. It is the best way I can think of to try and help even one person avoid any of the experiences I have unfortunately faced. Someone has always had to be a guinea pig for any of the treatments/medications that are available. Why not me?
I joke with my doctors that I am a full-time lab rat, if nothing else I am a good teaching tool for new doctors. I wouldn't wish my life on anyone, I can only hope that what it is gained from my participating in research is of benefit to others
I think most would get involved in scientific research to aid in the development of new medications, therapies that may help others and themselves. It would be a good feeling knowing that you contributed to a cure or treatment that is beneficial for people who need help.
To help advance science. Without research, some of us would be gone already. Research gives room to new innovations. For people to survive illnesses, scientific research is necessary. I participate to help save lives.
I have offered myself up for scientific research because I have Schwannomatosis or NF3 a very rare neurological condition, I have my own specialist for this condition, I personally, now aged 67 have had the condition from 1970, I can safely say some of my symptoms that I have reported on, hopefully will help all people with this painful condition. Is there anybody out there who has Schwannomatosis NF3 please get in touch!
Early in the spring of 2020, I decided to take an online drawing course. 7 lessons each of 3 parts. I couldn't complete the first 1/3 of the first lesson! My Essential Tremor stop me drawing. I got mad. I declared war and Essential Tremor! Silly for a non-medical person who at that time only knew the name Essential Tremor. Enter two good friends who helped me decide on what I could do about this big problem.
Anthony said; "You need to build a glove that befuddles your tremor". Some where in the next 6 months I came across the original papers that Cala Health published about the Cala One, later called the Cala Trio. Now known as the Cara kIQ. So I built one out of Commercial Off The Shelf h/w and wrote s/w on an Arduino microcontroller to control it. Good research yielded good results for me. 15 minutes of electrical neuro-stimulus gave me a hours relief from my hand tremors.
That initial research wet my appetite for further research. I since volunteered for 3 different studies in regards to Essential Tremor research.
I have said yes to research before for personal gain, like, one time when I wasseverely short of money, I took a 'job' buying bagels, corporate spy. I was young and felt horrible, but hungry. the pay was I got to eat the bagels and I got bus money. I used the bus money to look for work. in the midst of diagnosis of some things, and trying to find the best treatment for some other things, volunteering for research may or may not help me, but: I hope I can make it easier for someone else; I get to feel like al the crud I go thru with the juggling and self management (read: loneliness, isolation, and lack of input from clinicians) and chronic illness can be put to use, given some value (just being alive has worth) ; being part of a community towards a common goal (again with the meaning) feels appealing, enlivening ; and the times there is mula involved, it's helpful, because I can't do regular work. I'd like to be completely philanthropic, but financial concerns haven't stopped with maturity 😜.
Anytime there is a research I jump to it to see if I qualify. I recently sent a DNA swab to one of the largest studies for ME/CFS. I know that I may not benefit, but if future generations get better treatment because I spat in a bottle, filled out a survey, or spent time being asked questions then I don't feel it is too much to ask.
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