Diane Simmons

In this Pharma IQ exclusive Diane Simmons, President and CEO, Center for Information and Study on Clinical Research Participation (CISCRP), speaks to Pharma IQ about how CISCRP is working with the industry, academia and patient communities to increase clinical research participation, the success of recent campaigns to improve educational awareness and the impact social media is having on clinical research participation.

Pharma IQ: What are the common barriers to clinical research participation? D Simmons: As president and CEO of this independent non-profit I’m responsible for helping us to grow and to reach our target audience which is public and patients. Our mission is to help educate the public about the clinical research process. There are significant barriers to clinical research participation; we hear this on a regular basis from those who are recruiting for trials. And the underlying theme from public and patients, the ones who do not respond to the recruitment ads is that they really don’t understand the clinical research process. They don’t think it has anything to do with them when they hear the media telling them to come, be part of a trial.

So it’s clear to our non-profit that there’s a lack of basic education and we need to come through and provide education before participation. But beyond that, there’s this tremendous lack of trust that the patient has regarding the clinical research process. Oftentimes the patients and the public remember negative news stories about trials that have gone wrong and they don’t recognise all the medical advances that are the result of their participation in clinical trials. So if they are given the opportunity to learn more, to gain an understanding of clinical research, to hear the message from trusted sources, like the doctors and nurses that they interact with for the basic healthcare, then they’re more likely to be responsive to those clinical research ads and come through as participants.

Pharma IQ: How is CISCRP working with the industry, academia and patient communities to increase clinical research participation?

CISCRP has a wonderful opportunity to work collaboratively with the pharmaceutical companies, with those organisations like CROs with academic medical centres, with the government agencies who are involved in clinical research. And together what we have been able to do is to reach out to the public and provide basic educational tools like brochures, DVDs that are the stories of real patients and how they’re involved in clinical research and why. And also grassroots programmes – our supporters enable us to grab into various communities and work with all of these organisations, bringing the community together for the sake of the public and patients and letting them hear about clinical research and hear directly from members of their community about the clinical research process and their experience as clinical trial volunteers.

Pharma IQ: What recent campaigns have you run to increase educational awareness?

We have been running a wonderful public service campaign for a number of years – it’s called Medical Heroes. And the message is that clinical research volunteers are the heroes that help advance medical science. And the reason this is such an important public service campaign is because most people are walking around with the image that a clinical research volunteer is a guinea pig; and we’re trying to re-brand clinical research and let people appreciate how much the advances are due those brain cells. And are the first people to take medicine are those who hang in there as the trial protocols go forward and they need to give of their blood, give of their cells, be involved in medical advances.

Beyond the public service campaign, there are a number of initiatives where we can reach out and get people information that they need about clinical research trials. One of these initiatives is with pharmacies and the pharmacist. It’s long been known through a lot of public polls that the patients trust their pharmacists very much so it seems like an inevitable next step that patients should learn about trials from their pharmacist.

Pharma IQ: In hindsight is there anything you would have differently?

We have done a recent significant survey with about 2,600 patients where they said to us they wouldn’t like very much to turn to their pharmacists. They haven’t even done so today; they didn’t even think to ask their pharmacists about clinical trials. And our next phase of this initiative is to serve a pharmacist and see if they are interest, their ability to be part of the solution to providing education to patients.

CISCRP is a small non-profit with a big mission and we’re grateful for all the support that we have from our circle of supporters with about 400 members at this point. But in order to change public perception, we all have to be in it for the long haul. If you remember back about ten years, the organ donor community had a very negative image. People thought of selling organs as something horrible and behind the scenes and not legal and it took them ten years to change public perception so that now people feel proud of being an organ donor and speak up and call themselves and organ donor. [inlinead] Well, it seems that the clinical research volunteer community needs to make the same kind of progress, and we can’t, as an industry, think that one public service campaign will change public perception. But with the power of all the organisations involved in clinical research, if we all embrace this public service campaign and then it is possible in the years to come, we will move people’s acceptance, understanding, appreciation for the medical heroes who are clinical research volunteers. My hope is that more people embrace this public service campaign and make the message much louder.

Pharma IQ: What impact is social media having on clinical research participation?

Social media is having an impact on the volunteer community. Within our own website we have something called the Clinical Research Volunteer’s Community and it has about 500 clinical research volunteers who are sharing their experiences about trials. There’s a lot of confusion – there seems to be more need for avenues like social media for people to ask their questions, but it also is important that these chat rooms and these other forms of social media are moderated so that people get accurate information. There is a lot of negative or confused messages out there and isn’t an important stash – those organisations like our own educational organisation can come through and provide real information, the truth.

Pharma IQ: What are CISCRP's goals for 2012?

Well, we have a long list of things that we need to achieve in 2012 and going forward. Top of the list, though, is what I’d like to share with you which is that the unmet need that we hear the most of right now is that those who are in trials and complete the trials, typically do not hear back from their site about the results of the trial. And they don’t understand, why as a volunteer, that they wouldn’t be told what was learned from this trial – I volunteered, I gave of my time; it seems like the most obvious thing to do is to come back to those folks and tell them this is what was learned.

What CISCRP has been able to do is to work with some sponsors in taking what’s posted on ClinicalTrials.gov, though, the results of the trials with all the tables of data, we have turned those into easy to understand language. And we’ve provided back to the sites where we connect with the patients and say, this is the question I was asked and this is the answer to that question. The patients are thrilled; the sites are thrilled because they can keep the relationship with the patient going. And so we’re demonstrating to sponsors how this can… is a process that can be fulfilled rather easily and we are also talking to sponsors about the fact that you really can’t wait for the year or two that it takes for the trial results to be ready, and that you have to continue to communicate with these volunteers.

And so we’ve established an ongoing process – every three year, every six months – sending out to the patients information that talks about when their trial results will be ready, where it is along the continuum of completing the trial. And then, finally, when the trial results are available to provide it directly to them. It’s a basic need; it helps to build a community of ambassadors. These are volunteers who now feel proud of their contribution to advancing medical science, and so it’s something that we feel most proud of and I’d want to do whole-heartedly in the next year or two.

Interview conducted by Andrea Charles.

IQPC

Please note that we do all we can to ensure accuracy within the translation to word of audio interviews but that errors may still understandably occur in some cases. If you believe that a serious inaccuracy has been made within the text, please contact +44 (0) 207 368 9425 or email helen.winsor@iqpc.co.uk

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