Doctor shows patient chart
Simon Denegri is the National Director for Patients and the Public at the National Institute for Health Research (NIHR), and Chair of INVOLVE – the national advisory group for the promotion and support of public involvement in research funded by NIHR. In honor of International Clinical Trials Day, Mr. Denegri met with Quintiles to discuss his work with NIHR, and his efforts to raise awareness of clinical research among patient populations with its ‘OK to ask’ campaign. 

2015 International Clinical Trials DayQ: Why is it so important to talk to patients about clinical research opportunities? 

People usually become interested in participating in clinical trials when they are first diagnosed, but they don’t know how or where to look for opportunities. Nor has our current healthcare system been very good at helping them find their way. This was the inspiration behind the ‘OK to ask’ campaign.  

At NIHR we want to make sure people understand that clinical research is a possible choice for them as part of their care pathway. We explain how clinical research can benefit them, and how it can provide them with opportunities to try new treatments, gain new knowledge about their condition, and to be part of the wider effort to improve the lives of everyone suffering with that condition. 

Q: What are some common concerns patients and their families have about clinical research, and how do you address them? 

People express a range of fears about taking part in clinical research and the safety and the risks associated with using new drugs or treatments. Often they are also worried about how far they will have to travel, and whether participation will require them to take time off of work or arrange different childcare options. Care givers also have these concerns. If they feel like they’ve gotten to a point where they have the caregiving process under control they worry that the family member’s participation in a trial will create new problems for them. That can be really difficult if, for instance, you are caring for someone with dementia where routine and structure are very important aspects of care. 

Fortunately, we can make 99 percent of these problems go away by talking to the person and their carer and some effective planning. That is why it is so important to have these discussions with patients and their families, so you can dispel some of the myths that prevent them from participating in trials. It is also why we advocate involving patients and the public in designing research so that a clinical trial fits with the lives of patients and not the other way round. 

Q: What is the best way to connect with patients and educate them about clinical research opportunities? 

There are no magic bullets, and it mostly involves a lot of hard work. But there are some strategies we have found to be quite effective. 

Having people who run hospitals make resources about research visible to patients and families is very important. In the best examples, hospitals hang posters, and make leaflets and literature available at reception desks. They might also have greeters or ambassadors who talk to patients and their families about research opportunities and who make themselves available to answer questions about clinical research. I like to think of it as creating a “surround sound system”. Patients need to hear and see this information in as many places as possible for it to sink in. 

It is also critically important to train the supporting researchers, clinicians, nurses and other staff about how to talk to patients about clinical research opportunities. That can be more challenging than you might think. All research suggests that a trusted doctor is one of the most influential people in a patient’s life, but these doctors may not bring up opportunities to get involved in research because they do not feel confident to do so, and patients aren’t always comfortable asking about them. 

Q: Is that where the ‘OK to Ask’ campaign comes from? 

Yes. Much of the life-saving clinical research could not happen without millions of patients and caregivers stepping forward every year to take part. Those who volunteer in this way report a range of benefits and are pleased to be potentially helping others like them with the same condition. 

NIHR’s ‘OK to ask’ campaign, which takes place in the weeks leading up to and on International Clinical Trials Day (ICTD) on 20 May, is about encouraging more people to ask their doctor about being in research as part of their care and treatment and highlighting that they have a right to information about ‘relevant and appropriate’ research under the NHS Constitution. Over the past three years we’ve been making a lot of effort to get the word out on television, through broadcast media, and by handing out literature in hospitals and malls. We’ve also done a big push on social media, with our weekly #oktoaskhour twitter chats, where we invite experts including industry leaders, doctors and patients to answer questions about specific conditions. 

Q: What advice would you offer other organizations about their own outreach efforts to educate the patient community about clinical research opportunities? 

Keep your message simple and relevant. Avoid letting the conversation be dominated by the idea that you are trying to ‘increase the scientific literacy of the public.’ That doesn’t resonate with patients. Instead focus on how clinical research can benefit them, how the treatment could play a role in improving their care pathway, and their quality of life. And invite patients to critique your literature in the development stage, especially if it’s targeted to children and their families. They have a good sense of what will resonate with the patient community, and you should take advantage of their knowledge and experience. 

Finally, make it accessible and fun. Don’t just produce leaflets. Think about badges and other trinkets that can carry that brand message to your audience in a creative way. What I have really noticed about this year’s campaign is that many researchers are taking their message into the High Street or Shopping Mall. I am delighted that people now feel they have the confidence to do this rather than simply have a display in their hospital (although this is important too!). What is your hope for the future of clinical research participation? Fundamentally I believe that the more people are involved in research the healthier our nation will be. Right now more than 11 million people make a donation every year to medical research in the UK. If we could get even a small percentage of them to volunteer to be part of a clinical research project, that could have a huge impact on research but essentially the quality of the care and treatment available from our health and social care system.