Share
 
 
 
 
Research4Me
News Sep19
View this email in your browser
 
 
     Founder Update
Dear ,

I've been a little quieter over the last couple of months, quite literally, thanks to a fierce cold. Though it does not compare to the kind of ongoing chronic or lifethreatening health conditions many face, it was a gentle reminder of how hugely impactful poor health is to one's personal and work life. I have a heightened appreciation of how amazing the people are that take on the extra burden of advocacy and contributing to research, for (in most cases) the benefit of others. We all need to say thanks to these individuals and continue to work to reduce the emotional, practical and financial burden of participation and involvement in research.

I had the opportunity to attend the SWSLHD community and consumer participation (CCP) 13th annual conference lasdt week. It was inspiring (as I shared on LinkedIn if interested). I was reminded of how important literacy and health literacy are for helping us to navigate the health system, make decisions and take action around our health. I feel blessed to have a knowledge of how research can support my health literacy, and had the opportunity to talk about that with the audience. After all, how can we make informed decisions about care and treatment options if we are unaware of the research supporting them, or whether clinical trials might be a care option. The other presenters, however, shone the light on how complicated the issues are around health literacy, reminding me of why it is not surprising research is a long way down the list.

There is much we have to learn, and I can't help thinking the research world, as the generator of new knowledge, has a responsibility to think about how it can better support those participating and involved in research, and subsequently share the outcomes of their research, in a way that better supports health literacy.


Have a great month ahead, and I hope to bump into you before the end of the year. Keep an eye on our events page to see what I'll be up to, and pop into our Facebook group to see the research-related experiences, articles and opportunities being shared in the community.  Janelle.

Last week, we updated two guides that were launched in April last year as part of the 'Ask About Clinical Trials' campaign we led with other partners to support people and clinicians around clinical trials.

The first provides some advice for people wanting to ask their doctors about clinicals and questions/conversation starters if they aren't really sure how to bring up the topic.

The second is an introductory guide to clinical trials for GPs and other clinicians who may be less familiar with clinical trials, or how to support their patients who might be looking for trials, considering a trial or taking part in a trial. The guide also provide some posters for clinicians to encourage their patients to ask them about trials.

The updated versions are now available on our Publications page and we would encourage you to share them with people and clinicians you think might find them helpful.
Back in June, coincidentally at another South West Sydney event, we had the pleasure of listening to Carol Vleeskens, a member of the SPHERE Musculoskeletal Clinical Advisory Group Community and Consumer Council talk about her experience as a health consumer contributing to research. We asked Carol if she would be happy to share her talk with our community, and I am happy to say Carol obliged and her transcript has finally been published for you to read this month on our website.

Here's just some of the recent research, clinical trials and patient engagement articles and resources we thought you might find useful:

  • A recent study found that patients with advanced cancer who enrolled in clinical trials had a near 50% lower risk of death versus patients who received treatment outside a clinical trial. But, another European study found half of European patients surveyed with lung cancer had no concept of a cancer clinical trial and 22% had never heard of one.  This is heartbreaking to us and is why we work so hard to raise awareness of trials and the need for people to proactively raise the possibility with doctors, whatever the health condition.
  • Learning from the clinical trial experiences of those who have been involved has value to both patients and the researchers that conduct trials. To that end, we encourage you read the speech given by Linnea Olsen to the recent IASLC 2019 World Conference on Lung Cancer on the impact of a lung cancer diagnosis and clinical trials - the good and the challenging.
  • Researchers often exclude women how are pregnant from clinical trials for the understandable fear of risk. Undoubtedly, if you were pregnant and offered a clinical trial, you would put alot of thought into whether or not to agree. The reality is though, that if we don't have research that includes pregnant women, or pregnant women willing to participate, then we really have no clue about what medicines are safe during pregnancy - just look at thalidimide. This article shines some light on the moral imperative for more research to involve preganant women, to ensure optimal care and outcomes.
  • Want to learn more about how the Australian Department of Health is working to improve the clinical trials environment, and some of the different stakeholder groups involved? This website is a good start.
  • In light of earlier comments made about health literacy, we happened upon this UK-based global project around health literacy in clinical research that had a few resources.
  • Ken Getz, CISCRP, talks about the need for clinicians and patients to change how clinical research is viewed and its role in clinical care. In a similarly focussed article, Erem Latif, Evidera, talks about the need for all stakeholders, including clinicians, to make time for and thoughtfully consider the patient voice in clinical trials.
  • The Chief Medical Officer from the Pulmonary Fibrosis Foundation (PFF) shares how as a patient group PFF are helping advance clinical trials and divert people away from unregulated therapies like unapproved stem cell interventions.
  • The US FDA are currently consulting on a draft guidance document on "Patient Engagement in the Design and Conduct of Medical Device Clinical Investigations".  The consultation closes on the 22Nov2019. Click here for access to the document. And if you wondering why the FDA thinks this is important, read the acting FDA Commissioner's Statement.
  • In this piece, health care professional and FDA advisor Anita Gupta outlines WHY patient engagement in drug development matters. It's a great read for industry, clinical triallists and the general public.
  • This article discussed the use of patient preference studies during early drug development in order to align stakeholders and make sure development plans meet patient needs.
  • TransCelerate have released their Patient Protocol Engagement Toolkit (P-PET) with tools to help industry and researchers engage patients during trial protocol development. (Thanks to TJ Sharpe for giving us the heads up on this one after our last newsletter).
  • And just in case you haven't had enough, the August edition of the journal Health Expectations devoted a whole issue to public engagement and involvement in research. (Thanks to Paul Swain for sharing this to our FB group).

We are all about sharing great resources, whether or not they are ours, to build knowledge and capacity around medical research, clinical trials and patient engagement and involvement in research. Be like TJ and Paul and let us know if there are stories and information out there you think we should share here or join our Facebook group and share them with our community at any time.


These are the studies that starting recruiting in Australia & New Zealand during August 2019 as found on the ANZCTR 23Sep2019. Click on the links below if you are interested in further information and the contact people for any of these studies:

Research4Me has no relationship with any of these studies and provides this information as a public service to increase awareness of the diversity of research needing participants. If you would like to proactively advertise a study, check out below how we can help.


Do you want to help improve and speed up research?

Here's some of the way we can help you, whether a patient, carer, interested member of the public or research professional.



Ultimately, this community is here to support you and increase public awareness, participation and involvement in research. So if you have training or support needs, ideas or suggested improvements,
would like to tell your story, collaborate or join our Tribe, or you'd like to benefit from helping build our community, please get in touch.

REMINDER to RESEARCHERS:
Get the message out there about your research study needing participants or consumer input by sharing your opportunities in our Facebook Group for FREE every Tuesday from 5-10pm AEST.

More information is available on our
website.


You are receiving this email because you subscribed to our newsletter or database. Unsubscribe

 
AccessCR Pty Ltd
Level 13, Suite 1A
465 Victoria Ave
Chatswood NEW SOUTH WALES 2067
Australia


Email Marketing by ActiveCampaign