Irene Soulsby
I'm 63 and a member of VOICE at Newcastle Uni. I've been involved with various projects (Clinical Ageing, Gait Lab, Brain and Movement, Academic Psychiatry) I'm on Trial Steering Committees UK wide
Location Newcastle upon Tyne
Activity
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Irene Soulsby made a comment
Looking forward to seeing where everywhere is from. It's an amazing time for research
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Irene Soulsby made a comment
Welcome to the course, everyone. It's great to see the worldwide interest in this course and I look forward to reading the comments
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@TevitaMikaeleRakula it's amazing that this course is known worldwide!
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Irene Soulsby replied to John Castledine
Yes, the story about James Lind is really interesting!
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Irene Soulsby made a comment
Hello everyone! I'm Irene, and I live in the UK. I'm a cancer survivor of almost 20 years and like to say that "I'm here because of research". I discovered taking part in research by accident about 10 years ago, and I have participated in many things as a "Healthy Volunteer". Research covers many things, not just tablets and vaccines. I love seeing where...
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@MarilynSmellie Yes, even questionnaires can contribute to research
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Yes, I thought this was really good, I love how we can share and learn from each other
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Irene Soulsby replied to Karina Czerniewska
Yes, there is certainly a lot going on.
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Irene Soulsby replied to Marilyn Smellie
@JohnCastledine @MarilynSmellie I think I've heard recently that children "might not be small adults"
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Irene Soulsby replied to Amanda Boad
@AmandaBoad Yes, I'm really interested in hearing and also neuroscience
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Irene Soulsby made a comment
I thought that this was a fantastic study. It made me think that more areas would benefit from this type of study
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Yes, I like the way that we can share what we know. There's a lot out there!
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@lindseygleadhill Yes, a great summary!
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Irene Soulsby replied to Sarah Cluderay
Yes, it's amazing how many people contribute to Biobanks
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Irene Soulsby made a comment
Looking forward to meeting everyone!
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Yes, there are lots of opportunities. I enjoy focus groups, lots of talk going on and sharing information and experience.
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Irene Soulsby replied to Anne Lüneburg
That's a lovely thing to say @AnneLüneburg
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Yes, lots of trials have had to be adapted. Some trials are trying to include video participants now, that might not have been thought about when the trial was designed.
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I go to the Public Advisory Network meetings, they're really interesting and we share lots of information.
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Some of the projects that I'm taking part in are discussing the way we live now, for example, there are so many cars that they are having a negative impact on our health, too much pollution. We have created a world where cars have had a lot of impact.
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@AntjeCastien-Runge I was (and still am!) very conscious that "I am here because of research" and lots of people, many unknown, have contributed to me being here, and healthy. I wanted cures to "beat terrible disease", a lot of the time for others who might be diagnosed with the same disease, but I learned I could also contribute to other projects as a...
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Irene Soulsby replied to Sarah Cluderay
@SarahCluderay Yes, Biobanks are a great idea and I'm sure a lot of knowledge is gained this way.
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Irene Soulsby replied to Sarah Cluderay
Yes, Biobanks are a great idea and I'm sure a lot of knowledge is gained this way.
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Irene Soulsby replied to Rhianne Bostock
Yes, it's very complex!
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Irene Soulsby replied to Bola Aina
@BolaAina Yes, mental health is so important. A lot have been affected over the last year with the pandemic
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Irene Soulsby made a comment
Wow! It's just amazing to see where people are from!
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Irene Soulsby made a comment
Welcome everyone! Looking forward to finding out where everyone is from and their interests! Health research is changing all the time and it's great when we exchange knowledge and our experiences.
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Irene Soulsby made a comment
Looking forward to meeting the participants and sharing experiences!
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Irene Soulsby made a comment
I've been especially interested in the links that have been given. It's been great to see participation internationally, too!
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Irene Soulsby made a comment
Lots of interesting and information and it's been great to read the comments. Research is constantly changing and we've certainly been aware of it recently
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Yes, games and puzzles can play an important part
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Lots of research has had to adapt to our virtual world, too
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I think it's an exciting time for technology.
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@ChristineJoanDeVilla-Ragudo Yes, they are good questions to ask, It's surprising what foods and supplements can affect trials
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I like that, "walking alongside"
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Irene Soulsby made a comment
Research can be very complex and it's important that participants understand the studies
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Irene Soulsby made a comment
I have participated in this, too
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Thanks for sharing this, Sarah
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Also, the importance of involving elderly people in research, too
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Sometimes studies use drugs that have already been well-tested and are widely-used and are "repurposed"
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@MelindaJanePhillips I was really interested in the BIB study. I felt that it would be a good idea to have similar studies throughout the country
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@VioletRook Yes, I remember hearing about that one
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Irene Soulsby made a comment
A very useful exercise!
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Irene Soulsby replied to nick low
Great to hear!
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Irene Soulsby made a comment
Behind the research are real people who can speak for many others.
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Irene Soulsby made a comment
Great to see that people are participating from all over the world! How did everyone find out about this course?
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Irene Soulsby made a comment
Hello everyone! I'm Irene and I volunteer for health research. Looking forward to the comments and hearing your stories.
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I first found out about volunteering for Newcastle Medical School many years ago and I am a "patient" for 1st and 2nd year students. I enjoyed taking part and I looked for other opportunities. I came across the Institute of Neroscience and I have participated in many of their projects over the years. I signed up to IoN and receive an email when...
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Irene Soulsby replied to Irene Soulsby
I always like to say that if I am going to a hospital or GP appointment I can be very nervous and it must be the same for the trainees when under pressure, especially with someone that they have not met before. It will be their life for the future, and it's great to see their confidence growing. I don't mind repeating the examination, and some medical...
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Irene Soulsby made a comment
It's been really interesting to read all of the comments and find out everyone's interest. I'll be joining up again when the course is run in the future.
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@jacquelinegranleese Thanks for sharing the links to the group in NI
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Irene Soulsby made a comment
The rise of Artificial Intelligecnce (AI) n research I feel is very interesting
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Irene Soulsby made a comment
It's always interesting to read the comments and every time the course is run, more knowledge is shared
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Irene Soulsby made a comment
I am a "patient" for trainee doctors and in their training it is always emphasised how important it is to respect the patient.
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Also All Trials are encouraging reporting of trials. it's important to know what doesn't work as well as what is successful.
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It's always worthwhile asking if travel expenses can be covered. Sometimes a taxi can be booked for the participant or the researcher may be ale to reimburse bus fares
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research might be a one off appointment or may take part over many months or even years
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Sometimes as well, the researcher has a specific requirement for a certain age group. I have contacted researchers to say that I'm in another age group and they have contacted me later in the study to participate when they are looking for participants of other ages.
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Irene Soulsby made a comment
Please can I take this opportunity to share a link to a current research study that I have recently completed. This is a simple online questionnaire, and a good example of how Health Research can be completed without taking new treatments or visiting a hospital. As with any research activity, it is your choice as to whether you want to complete the...
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Irene Soulsby made a comment
Thanks for the twitter #whywedoresearch link. We are learning from each other all the time
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Irene Soulsby made a comment
Within a family of brothers and sisters, they might have different health conditions, we are complex.
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Irene Soulsby made a comment
Perhaps a condition might be inherited and you might be looking at your own future? (Dementia studies) I am hoping to get involved with a study for Parkinsons which involves wearing a monitor to pick up activity/movements. The researcher is looking for participants with Parkinsons and others who do not.
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Irene Soulsby replied to Paul Bradley
Yes, we are all pulling together at this time
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Irene Soulsby made a comment
I have taken part in a supplement trial which was really interesting. The options were a placebo (dummy pill), a pill made up of turmeric and turmeric powder. I didn't know if I was taking the placebo or the pill made up of turmeric, we had to go to a debrief at the end of the study to let us know what the findings were (which raised further questions for...
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Irene Soulsby made a comment
Perhaps drugs that are already in use, can be repurposed. They have already been tested and not cause harm.
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Irene Soulsby made a comment
I thought that this was a really great idea and it would be very useful to roll-out all over the country (and other areas of the world). Our areas vary greatly with health, some have a lot of health inequalities.
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That's a really interesting comment, Pretty, and I am aware of more research into palliative and end of life. I'm sure that we all agree with you.
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I am on several trials as a Patient and Public Involvement Member, and all of the trials are being put on hold, staff are sometimes moved to "frontline" care. Priorities have shifted and researchers all over the word are pulling together
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Irene Soulsby made a comment
Unfortunately, untrue reports continue in the news. "wonder cures"
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Irene Soulsby made a comment
Being diagnosed with something often comes as a huge shock and you might want to find out more about your condition, for example might it be inherited? Are there trials to find out more about it? Are others in the same position?
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Irene Soulsby made a comment
Health research is changing all the time
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Irene Soulsby made a comment
Looking forward to the course being re-run and meeting the participants online. The comments are always an interesting read and we can learn a lot from each other, too.
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Irene Soulsby made a comment
I'll definitely be looking for more opportunities to be involved!
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Irene Soulsby made a comment
Patient Research Ambassadors are now known as "Research Champions" so you might come across that term now
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Irene Soulsby made a comment
20 May 2020 is International Clinical Trials Day. Check out https://www.nihr.ac.uk/explore-nihr/support/clinical-research-network.htm and find out about Local Clinical Research Networks and events.
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Irene Soulsby made a comment
People are living longer but also with multiple conditions, often on lots of medication.
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Irene Soulsby made a comment
When I had my treatment for breast cancer in 2003, I was given Tamoxifen for several years. At the time I was told about the side effects that I might experience, but I didn't experience any.
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Irene Soulsby made a comment
Looking forward to this week!
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Irene Soulsby made a comment
One of the research projects that I participated in, took over 15 months and required many visits. The researcher came from Brazil and the research took place at my local University. For this project, I had to wear electrodes on my arm and keep very still and I would get an occasional "stim" (very slight shock to make muscle twitch) I had to watch a video...
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Irene Soulsby made a comment
Look at the James Lind Alliance, this is another way of getting involved http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/
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Irene Soulsby made a comment
A very informative video taking us through the consent process
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Yes, a great point
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Irene Soulsby made a comment
I have participated in http://protectstudy.org.uk/ for several years. Several times a year I get questionnaires on various topics and also get to play games!
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Irene Soulsby made a comment
An excellent way to describe the different Phases
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Irene Soulsby made a comment
More research is needed into different ethnicities, perhaps not all medicines will be as effective for them?
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Yes, our population is increasing in age and may need to be included as well
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Irene Soulsby made a comment
What a great project!
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Irene Soulsby made a comment
What a great project!
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Like everything in the past, this has never much been spoken about. Perhaps we now want to find out more.
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Irene Soulsby replied to Chris G
That's a really interesting link. Sometimes games played on mobiles are used in research too (ones that are specific to health conditions)
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@RichardLawson Yes, it's great that "ordinary people" can take part
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Often volunteers want to find cures or treatments for other people who might go through the same
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Irene Soulsby made a comment
Research is all around us, even when we don't realise it
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Irene Soulsby replied to Angela Davies
People based research is so important
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Irene Soulsby replied to Oluwakemi Adediran
That's a good way to explain it, experimenting with different things
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Irene Soulsby replied to Aina Odion-Akhaine
That's a great way to put it, not just about working in laboratories!
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Irene Soulsby made a comment
That's a good way to say it - "a team effort". When I volunteer I feel as if I am part of a team.
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Irene Soulsby replied to Irene Soulsby
@HelenCooke catching up a bit at the weekend, great to see lots of comments coming in from everyone now. Yes, our paths have crossed a couple of times, hopefully meet you again soon.
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Irene Soulsby made a comment
Really enjoyable and I look forward to participating in another course!
