From our founder....

The concept of Research4Me was launched in February this year and ever since, I've been making incremental steps towards the vision of creating an interactive environment for the public to engage with each other (and researchers) for questions, support, and the sharing of experiences around clinical trials. The hope is that this may lead to greater public involvement in trials as participants and collaborators, helping researchers improve and speed up trials, so we all get access to better treatment sooner. As much as I have been able, I've engaged with health consumers to shape what an online community might look like and its functionality, and I'd like to thank everyone that has generously contributed their thoughts to our surveys, discussions and platform reviews this year. It has at times meaning I've had to scrap ideas and start again, but at the end of the day, this is a community for you, not me, so has to be a place that meets your needs.

Just last week, we hit a significant milestone in that journey with the release of the first version of our interactive online community space, which I hope you will all join and actively participate in. Our philosophy is that everyone should have equal access to information and opportunities to get involved in clinical trials, no matter your background, and so we've made access to the primary community free to everyone as individuals.

As members of the public, we hope you will find this a safe and respectful community in which you can be supported, share your trials experience, ask questions about trials and find opportunities to get involved. You may be part of a group that might find value in hosting their own community on the platform, and we welcome the opportunity to talk further with you about that.  

For research professionals, interacting on the community as an individual with your own personal health interests is free. If however you can see the professional potential for networking with colleagues on best practices to engage with the public, hosting your own communities, recruiting and engaging the public in your research, please be mindful of our terms and conditions of use and contact us to discuss the professional possibilities.

With the update of the website with the community, we have also created a number of other new pages on the website, including our news page and blog . So to keep this wrap somewhat short, I'll let you take a look at those to see what else we've been up to over the past very busy month.

I've had many people say building an online community would be of value. Now that the first step has been created, I hope you will join and encourage others to join, so it can continue to improve and realise the value I know will be possible with a large enough community of the public and researchers coming together.

It's now over to you...

                                                               Kind regards,
                                                               Janelle, Research4Me

Current Opportunities

We currently have open a number of surveys to understand:
  • The experiences of those that have never taken part in a trial around clinical trials
  • The experiences of those that have taken part in a clinical trial
  • The experience of searching for trials and what the ultimate trial search tool would do.
All our opportunities to get involved are listed on the website. Join up to contribute to these surveys, or help answers the questions posed by us or other community members on the community forums.

Trial Spotting

Each month we try to demonstrate the diversity of clinical trials by showing 5  clinical trials on the Australian New Zealand Clinical Trials Register currently looking for participants. Please visit the links provided and contact the researchers directly if interested in these trials, as we have no further information about or links with any of these trials.

What We've Been Reading...

Here's 10 of the articles relating to clinical trials and public and patient involvement in them that we have found interesting in the past month. Feel free to share with us other stories you think this community might enjoy via our Facebook page, or by tagging us on Twitter (@Res4Me).

News Article: Researchers question exclusion of people with prior cancer history from clinical trials.
Eligibility criteria can greatly impact recruitment to trials if not carefully considered. It seems as we get more successful at treating cancer, and there are more survivors, the common trial inclusion criteria of 'no previous cancer' might need a rethink. Researchers from UT Southwestern's Simmons Cancer Center have found a quarter of newly diagnosed cancer patients 65 or older are survivors who had a prior cancer – often preventing them from participating in clinical trials for their new cancer.

Article: Improving Patient Access, the UCB way
The Head of Global Clinical Development and Medical Affairs at pharmaceutical company UCB talks about how understanding what is important to patients is key to UCB’s approach to drug development, and it is incorporating this into its clinical trial design. "Engaging with patients before studies start, and incorporating measures that are relevant to them and including them in the clinical trial, establishes that you’re satisfying the patient need as well as demonstrating value above traditional measures.”

Commentary: Reaping the Bounty of Publicly Available Clinical Trial Consent Forms
The Hastings Centre have highlighted how has begun accepting consent forms for public posting on a voluntary basis, and how in 2018, legislative revisions slated to take effect will require that at least one consent form for each clinical trial be made publicly available. Given the confidentiality surrounding patient information and consent forms now, it will be interesting to see how this move is handled by those running trials.

Clinical Therapeutics Article: #PatientVoiceMatters: How Social Media Is Bringing Patients and Biopharmaceutical Companies Together to Improve Drug Development
This month, the journal Clinical Therapeutics have published a number of articles relating to to growing trend to patient involvement and drug development. This article is a nice introduction to that series of articles. We recommend taking a look at this article, a number of the references it cites and the other articles in this edition if you are interested in understanding more about public and patient involvement in drug development and clinical trials.

News story: I Participated in a Clinical Trial That Saved My Life
It's stories like these from a mum with breast cancer, that drive Research4Me's efforts to make sure everyone is aware of clinical trials as a potential care option, that everyone knows to ask their clinician about them, and then knows how to evaluate whether or not to participate from their own individual perspective and circumstances.

ASCO News Article: Representation of Minorities and Women in Oncology Clinical Trials From 2003 to 2016 
In a study reported in the Journal of Oncology Practice, Duma et al found that African American, Hispanic, older, and female patients were underrepresented in oncology clinical trials during the period of 2003 to 2016. It's really important that research continues to investigate why this is, and how it can be fixed, as making sure treatments are effective for everyone, and everyone has access to clinical trials, is critical.

CenterWatch News: Diversity in clinical trials critical to refining medicines and therapies
This article talks about a recent symposium led by leaders from Northwell Health’s Feinstein Institute for Medical Research, the FDA and pharmaceutical company Boehringer Ingelheim on the barriers and opportunities to increase patient diversity in clinical trials. As per the previous article, diversity in clinical trials is important because medicines may affect people differently based on age, sex and race.

ClinicalLeader: Turning A Ship: How Janssen Is Changing Its Culture For Patients
The process of getting the patient voice heard in pharma and drug development is not always easy. Katie Mazuk, senior director, global head investigator and patient engagement for Janssen, alks about the challenges and how Janssen is approaching it.

ApplClinTrials: Through the Patient Perspective: Collaborating to Improve Research and Development
This article provides some examples of how collaboration with patients and patient advocates can enhance research and development efforts. The article suggest collaboration translates into "increased options for patients and faster recruitment to clinical trials with potential for bringing innovations to market more quickly." That pretty well aligns with what we are trying to achieve through Research4Me.

US TV Story: Artwork installed at Innovation Quarter in honor of clinical trial participants 
Eli Lilly sponsored the creation of 3 artworks this year to celebrate the journey of clinical trial participation and give people an opportunity to share what clinical trials mean to them. The last of the 3 artworks was revealed on the 21Nov and this story talks about this initiative and unveiling. 

As an aside, our founder Janelle had the opportunity to contribute to this initiative earlier this year. It was theoretically open only to US residents to take part, but they let Janelle contribute a brick when she visited the US for a conference where bricks were being created. Janelle's no artist, but it gave her an opportunity to share what clinical trials and those that participate mean for her, as an Australian.

We hope you have enjoyed the November Newsletter.  

Please share it with anyone you think might find it of value, sign up if you didn't get it directly, and let us know if you have suggestions for improving the newsletter.
The Research4Me Nov17 Newsletter has been released information on out new community for clinical trials, and public and patient involvement in trials.
Research4Me Nov17 Newsletter now released. #clinicaltrials #patientinvolvement #PPI
You might be interested in the Research4Me Nov17 Newsletter
You might find this newsletter from Research4Me interesting, if you have an interest in clinical trials, and public and patient involvement in them.
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