During May, a 31 day campaign to share the thoughts, feelings, hopes, and challenges of clinical trials from the perspective of those that have taken part in trials, or cared for those that have. The purpose of the campaign was to elevate the human experience of trials, to raise awareness of the opportunity and hope of clinical trials.
In case you missed the campaign, we have listed below all the perspectives shared below. However we'd also encourage you to look back at the original social posts on either AccessCR’s LinkedIn, Instagram, Facebook orTwitter accounts for our commentary around these posts. Thankyou to everyone that generously shared their perspectives, such that you might get a glimpse into the world and experiences of trial participants and their families.
For those working in clinical trials, let these reflections be a reminder of why what you do is important, and valued, but what in some cases still needs some attention. For without trial participants, there is no industry.
For anyone that experiences the healthcare system, without trial participants, medical knowledge and care would not be what it is today. We encourage you to ask your clinicans about whether there may be any clinical trials available relevant for you. Much better to know all your options, and perhaps say no, than to have no knowledge or choice.
If you would like to hear about the trials starting in Australia each fortnight, or the opportunities to contribute and get involved in research in other ways, then sign up for our CCReW newsletter. If you are a team that would like to let the public know about a trial you've just opened, or a research event/opportunity they could get involved in, then submit a request to share it in the fortnightly CCReW Newsletter.
D1: The first share is a video from a group called ConViCTioN talking about why they value clinical trials and participation in them.
D2: A clinical trial saved my life. People with advanced disease are risk takers and are very happy to be given an extra chance. Well run clinical trials are better than standard treatment providing the consumer with very personal attention. Clinical trials need to improve the diversity – racial, geographic and socio-economic participation, but also comorbidities reflecting the real life use of the treatment – Karen van Gorp, trial participant.
D3: Large, multi-centre clinical trials matter because without them, the practice of medicine cannot progress. I have meds for managing my asthma, my IBD. But not for my ME/CFS. Why? Because the $ have not been spent on large trials of potential therapies for ME/CFS – Penelope Jane McMillan, Advocate.
D4: A significant number of clinical trials fail yet a
significant number of patient participants for whatever reason, do better in a
trial – many in placebo groups! Why? We’re not sure, but the answer is in the
context, in precision. Regardless, working collaboratively to design, measure
and appraise clinical trials, fully understanding the knowledge and motivations
held by a diversity of jobs and technologies (including patient experts), can optimise
these statistics moving forward. In the meantime, more participants will
experience a better level of health custodianship – call that progress, legacy
or palindrome, for “The meaning of Life is a Life of Meaning.” [Christopher
Furlong, Forever 17]. – Deb Robins, Carer
D5: Because clinical trials give people hope (in terms of possible personal benefits and in terms of knowing someone cares enough to be conducting the research at all). – Dr Jane Thompson, Research Participant and Advocate
D6: Throughout my clinical trial I was closely monitored. It was reassuring for us to get all that information. – Robert, Cremorne, Australian Department of Health’s Helping Our Health campaign.
D7: The people involved in the clinical trial were amazing. They keep the families involved in what’s going on. - Megan and Leila, Northmead, Australian Department of Health’s Helping Our Health campaign.
D8: I have been in four clinical trials and would
participate again, if necessary. I’m a huge supporter of research and clinical
trials. It’s the only way that medicines moves forward to create new and better
treatments for all of us. - Reina S. Weiner, Research Participant and Advocate.
D9: Because without clinical trials (CT), more children and young people diagnosed with cancer will suffer relapses, unnecessary harm (side & late effects) from the outdated, genetically inappropriate & knowingly harmful 'treatment', and die. And not all CT's are equal. CT's that fail to involve and value consumers in genuine and meaningful co-design etc are wasting precious public funds, as they will never hit the CT bullseye without us. – Nicole Kennedy, Carer and Advocate.
D10: Clinical trials are obviously critical for the ongoing development of drugs & therapies that benefit the wider community & future generations. But for life-limiting conditions like Sanfilippo syndrome, clinical trials also represent a unique opportunity for patients to access emerging treatments that could be their only chance for intervention within their lifetime. When a condition is so aggressive and no approved treatments exist, access via a clinical trial is literally the only chance a patient might have. – Megan Maack, Mother and Advocate
D11: One would never know the impact of clinical trials until the opportunity to live is to be given a chance to participate. As a carer, clinical trials afforded my family an additional 2 years to make heartwarming memories and say goodbye to my late husband. – Irene Wong, Carer.
D12: Clinical trial participants learn a lot about the
treatment or drug they are on, as they are living it every day. It’s a missed
opportunity to not ask participants about their experiences and include this
knowledge in publications and Health Technology Assessment. Participants can
provide more than a data point. – Sarah Lukeman, Trial Participant and
Advocate.
D13: There’s a lot of work involved for people taking part in a clinical trial, and that should be recognised by sharing the results with the participants. Sadly, most clinical trials do not provide a lay summary to participants, or even give them the courtesy of letting them know when the results have been published or providing a link or copy of the academic paper. How much better would the clinical trial experience would be if there was communication about what was happening with a study throughout the trial and after it had finished.”. – Sarah Lukeman, Trial Participant and Advocate.
D14: I embarked on researching what might be available knowing that it would probably need to be a clinical trial. I didn't really have any understanding of clinical trials, and I really didn't know what was out there. And it really required persistence and a lot of time. Read more: https://ccrew.accesscr.com.au/blog/leanne-finding-osteosarcoma-clinical-trials/. – Leanne, Carer
D15: Participation in a clinical trial gives you access to additional care and testing that may not have otherwise done. This can give you additional information about your condition you might not have found out. Finding out about the option of clinical trials can sometimes be an accident – patients often find out from other patients, not necessarily their healthcare professionals. Read more: https://research4me.accesscr.com.au/been-in-a-clinical-trial-pexs2018-trialstues/ - Jill and Lillian, trial participants, PEx2018
D16: Clinical trials mean to me * The possibility of more
time with loved ones; * Hope; * Choice; * Evidence - what works, what doesn't
work, and for whom. – Janelle, proud daughter of a trial participant, trial
professional & advocate for the lived experience voice in research.
D17: I didn't think I would live long enough to see my 3 year old start primary school. But, thanks to a clinical trial, I'm watching her finish her final year of primary school and growing up to be such an amazing person that I'm incredibly proud of. I'm so grateful for this gift of life and time. – Lillian, Trial Participant.
D18: Without clinical trials, we will never find a cure for
our disease nor modifying treatment to improve our quality of life. - Patrick,
Rare disease advocate
D19: When on a clinical trial, it’s not clear what measurements and tests are part of the standard medical care and what are for the purposes of the trial. Making this clear could be seen as part of informed consent. It could also increase engagement and make patients less irritated by the tests, knowing they have a purpose and are in a sense the price you pay to take part. – Steve, Carer.
D20: On international clinical trials day, we are
celebrating the collective voices of hundreds that contributed to our wordcloud
a couple of years on what clinical trials mean to them. The most prominent
words are hope, future, progress, opportunity, innovation, health, science,
patient, passion, life, options.
D21: A clinical trial gave my husband access to treatment that would normally be prohibitively expensive, and close supervision in terms of pain management and quality of life. The opportunity to be involved in a clinical trial was the shift in focus he needed and it made me feel much more connected to his care. - Sonia Dixon, Carer
D22: 1. After all other avenues proved ineffective in treating chronic pain, a medicinal cannabis trial gave my wife better pain relief with fewer side effects than opioids; 2. Participation in a trial of a monoclonal antibody for a particular asthma pathway has seen my wife able to get on without using a nebuliser for over a year. – Steve, carer.
D23: As a trial participant, your safety comes first, and anything you are concerned about should be addressed. I felt like I was helping other people… it wasn’t so much about helping me, but about getting the information that could help others. – Vanessa, Trial Participant
D24: When I found I had MS I was offered the chance by my
neurologist to participate in a clinical trial.
I was interested as I wanted access to latest treatments and I was open
to trying anything that might help.
Whilst on the trial, I had regular free access to additional health
professionals and examinations meaning I was getting a higher level of care
than before or after. The good news for
me is that the drug worked for me, and I have remained symptom free. - AP,
trial participant
D25: Patient advocacy groups can play a critical role in connecting people to clinical trial information, because we often have connections to the research community as well as the community of people affected by disease. There is so much information 'out there' on registries or in the press. We can help direct it to the people who need it most. We need to do it responsibly, so that participants can make sound decisions about participation, and so that research can move forward toward cures. – Sara Bernstein, Advocate
D26: I saw an ad asking for volunteers for a clinical trial. I asked lots of questions about the process, the organisation, the incentives, risks and drawbacks, dates and timing options and confidentiality. I was so disappointed when I turned up for screening but was ineligible. I felt annoyed that I had spent time investing in it only to be told I was no longer suitable. – Michelle, potential trial participant.
D27: My advice is to ask questions. There are a lot of things to take into consideration. But if your current treatment is not working for you, its another thing to consider. – Vanessa, Trial Participant
D28: Even though we did not get the outcome we were after
from the clinical trial, there were a number of positive effects like feeling
‘seen’ and ‘heard’, and that even in our darkest hour, the inclusion of
Anthony’s experience in a clinical trial can give a glimmer of hope to others
in the future. - Sonia Dixon, Carer
D29: Because for under-researched conditions, the tests that might shed light on what is happening and point to effective treatment pathways don't seem to exist yet in a clinical setting. - @3TomatoesShort
D30: We can’t all be
medical doctors but it is interesting to be actively involved in finding a cure
for our own medical problems. - AP,
trial participant
D31: My clinical trial gave me hope & a lifeline at a
time when I felt there was none. I received cutting edge treatment which saved
my life. Thanks to my clinical trial my children still have their mum & my
husband still has his wife 8.5yrs later. – Lisa, Trial Participant and
Advocate.
