Participants Needed for a Patient Advisory Board on Clinical Trials

[Paul_Howard]

Have you ever been in a clinical trial or wanted to participate in one? Would you like an opportunity to share your thoughts on the clinical trials process? If so, the opportunity to serve on a Patient Advisory Board might be for you!

The Center for Information and Study on Clinical Research Participation (CISCRP) is a non-profit organization based in the United States, dedicated to engaging the public and patients as partners in the clinical research process. To advance this mission, CISCRP regularly conducts Patient Advisory Board meetings where patients have an opportunity to provide feedback on various clinical research topics.

CISRP are seeking participants who must be able to commit to attend 2 virtual meetings and one face-to-face meeting in the US. Participants must;

- have reliable access to a computer with internet, a microphone, a camera

- speak fluent English

- be aged over 18

Travel expenses will be reimbursed (airfare must be economy and all costs including accommodation will need to be pre-approved prior to booking - travel insurance will not be reimbursed). In addition participants will receive the equivalent in local currency of $50.00 USD per hour in appreciation for their time.

In each meeting, participants will provide feedback on ways to potentially improve the clinical research process. Topics will involve;

- ways to enhance the informed consent process

- ways to better label study medications

- how to raise awareness of and involvement in clinical trials.

To apply: Please fill out this brief online survey by August 5, 2016

docs.google.com/forms/d/e/1...

[tashi]

Hello Paul

We met recently in May 2019 at the Lupus event in the Devon Hotel. I hope this gets to you as it's commenting on a very old post.

I wanted to let you know this was the patient advisory board that I am involved in - thanks entirely to your post on this site. I joined a full expenses paid meeting, international group, in New York at Pfizer HQ in 2016. It was an opportunity of a lifetime for me as I went on to visit my brother in Detroit after his last chemo session (as a surprise).

Since then I've been to a London meeting and taken part in Web conferences. There is a good mix of conditions represented and many participants have experience of clinical trials, good discussions.

I have participated on e-labelling project for trial drugs with view to how this would work for all prescribed medications; my rheumatology consultant thought this was great but wants e-prescriptions first!

I have also participated on the clinical trials registry project - European & American versions, again the focus is how to make everything patient /carer friendly as well as satisfying mandatory legal requirements etc. Ciscrp are working to demystify clinical trials to encourage participation. As US panel members stated for them it can be financially useful as no payment is needed for their trial meds. As a starting point Ciscrp want the trials databases to be user friendly: easy to search by condition but also to allow a brief header to show most important /useful information that would allow the user to see if the trial was worth clicking on for more in depth information. Header information could be anything from type / length / frequency or location of treatment to what phase of drug trial it is. A very over-simplified synopsis lol.

Both projects are on-going but at the stage we're allowed to talk about them.

Worth checking Ciscrp website if you ever have time!!

It's good to feel that the experience of a sometimes awful condition to live with, can help to improve access for others to many related services. I've often struggled to find meaning in being ill but getting involved in things like this, user research or other focus groups is very positive and meaningful. I would recommend anyone to get involved even in online surveys - everyone has experience and a valid point of view.

Thank you for posting the original advertisement!

It was lovely to meet you and the wonderful speakers. Hope to see you again one day.

Regards

Diane (Tashi)

[Paul_Howard Partner LUPUS UK in reply to tashi]

Hi Diane,

It was really lovely to meet you in Exeter and I'm so thrilled that you've had such amazing opportunities off the back of this post. Thank you so much for everything you have been doing to help drive change and improvement for the future.