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International Clinical Trials

Bring it Onlline



Social media provides a great opportunity to engage patients, helping them to understand the science behind clinical research. Putting the theory into practice requires a tactical approach.

We all recognise that most wonders of modern medicine would have been impossible without patient participation in clinical research. Their involvement has helped to prolong lives, turn deadly diseases into chronic ones and increase the cure rate for numerous serious conditions. No matter what their motivation to participate, there’s no doubt that we couldn’t have done it without them.

Yet, despite how far we’ve come, less than one per cent of the global population participates in clinical research each year (1). And the increasing complexity of studies is not making patient recruitment any easier. We marvel at how much more rapidly we could advance medicine by substantially increasing the number of clinical trial participants – even if just to enrol more studies on time. However, while disease advocacy groups and biopharmaceutical companies have given tremendous effort to raising awareness of studies, we aren’t making a dent in participation levels. Public attitudes toward clinical research still often depict study participants as guinea pigs or others upon whom research is conducted.

A Different Approach

Clearly it’s time to find a new way to engage patients to consider clinical research. Let’s start with how to best engage patients today, and then consider the focus of our discussion once we do. The last time I checked, there were 845 million active users on Facebook – more than the population of all of Europe. Facebook is now available in around 70 languages. Through social networking, online communities, and other engagement platforms, the internet has attracted a universe of e-patients who bring greater sophistication, knowledge and accountability for their own health and healthcare. The body of medical information on the web has exploded, making details about symptoms, diagnoses and treatments more accessible to patients than ever before. In developed nations across the globe, between 70 and 95 per cent of the population mine the internet for health information at any given time (2). Meanwhile, social media is facilitating new virtual – yet very real – patient communities.

These patients have the time, motivation and capacity to research treatment options – and they have an increasing number of resources available to them. So in reaching out to patients, it makes sense to go where they are: online. Social media has helped to create more informed patients. This, in turn, has lead to more detailed and involved discussions between patient and physician.

Social media has also allowed for greater communication and sharing of experiences between patients. PatientsLikeMe.com and Inspire.com are two online resources that allow for the effective sharing of experiences – and through this exchange, patients are, in essence, helping other patients.

Shaping Patient Awareness

However, there’s an immense leap from researching symptoms online to exploring a clinical research study online. For most patients, a research study may not come to mind as an option. Even if it did, they may not know where to fi nd one or even know the process for determining whether or not they may qualify. Patients must know what clinical research entails. They need to know that their health will be carefully compared to the inclusion/exclusion criteria of the study protocol criteria – they need to understand what a protocol is and how it guides the implementation of the study.

So what if our conversations about clinical research focus on first shaping patients’ awareness of science – and more specifically, how scientific method applies to clinical research? As crucial members of the scientific research community, patients should be involved earlier on, and not as subjects, but as partners working with us toward the end goal of advancing medicine. Social media provides an outlet to achieve this. Tapping into the innate curiosity and tenacity of e-patients, this approach can help inform their discussions with physicians and, consequently, their decisions about healthcare.

At one time, the focus may cover emerging drugs or how certain novel therapies work. At another, it may involve a success story in drug development that is improving quality of life for millions of patients. Patient protection would also be an important topic to feature, since research reveals that as patients’ awareness of regulations to protect them improve, their willingness to participate increases.

Putting Theory into Practice

With all of this in mind, here are some tactics you may consider within your own clinical research enterprise to engage patients in their understanding of the science behind clinical research:

  • Use Twitter to advance discussions about clinical research findings and their role in advancing treatments. Published study results can provide content for lively and informed discussions within the community of patients, caregivers, clinicians and researchers. Questions can be posed and perspectives shared, making for an engaging exchange. The impact of research on the treatment landscape can be discussed as well.
  • Raise awareness about successful drug development. Dedicating a section of your website to the evolution of an approved medicine through its key stages from conception to commercialisation could help patients appreciate the body of work involved in drug development. This may include discussing the science behind a drug in plain language – and perhaps outlining the phases of clinical research and the number of patients who were treated with the study drug each step of the way. This tactic could also depict the number of patients who take and benefit from the drug now, as well as its impact on overall health outcomes.
  • Introduce the role of the principal investigator. Establishing a patient-facing blog or webinar series presented by a principal investigator may help patients understand the dedication behind a company’s efforts in exploring novel therapies. This may be particularly effective among patient communities with a keen interest in possible emerging therapies for their conditions.
  • Make patient protections more common knowledge. Using creative ways to share the Belmont Report and other patient protections, such as the World Medical Association’s Declaration of Helsinki, may help ensure that more people understand the principles established to guide investigators in their work with patients. Sixty-six per cent of survey respondents report that they believe people would be more willing to participate in clinical research if they were aware of the measures in place to protect them (3). So it makes sense to make these protections known, not at the time of informed consent, but earlier on – similar to the emphasis on introducing healthcare proxies and advanced directives early in a patient’s overall care continuum.

All the while, it’s critical to remember that creativity, transparency and authenticity are essential to maintaining the trust of patients, their caregivers and advocacy groups. Some sponsor-backed sites have faced scrutiny for potentially exploiting patients in the face of online communications with them, creating some aversion to this type of engagement. While these fears arise from valid concerns, the discourse they trigger should consider the enrichment in patient-to-patient engagement, as well as increased opportunities for patients to widen their care circles, potentially leading to better treatments.

Today’s generation of e-patients have a unique propensity for transparency and privacy. This is evident in our own online engagement. For instance, we recently conducted an interview with Jenni Prokopy, founder and editor of ChronicBabe.com – an online community inspired by younger women with chronic health issues. Jenni shared her perception of companies who greet her online: “It’s really about building those personal relationships [first] . . . So sending a blast out to tons of people that isn’t coordinated or specific is useless. Building relationships with people online through Twitter or Facebook or even LinkedIn if that’s appropriate makes such a difference.”

Building relationships takes time and effort, and a longterm commitment. CallingAllTypes.com – an initiative spearheaded by BBK – is another example of an online health movement designed to inform and engage. Through resources like these, patients are empowered in their efforts to better manage their health.

All things considered, presenting study opportunities should be a worthy and carefully regulated option for qualified participants as part of providing healthcare today. Online explorations into the science behind clinical research can help patients more readily make that leap and then engage in more informed discussions with their physicians. Patients are looking for proven treatments as well as new approaches and whatever they believe constitutes the best care. A patient’s choice to participate in clinical research lives within the context of this search. It’s a decision they’ll likely favour more, not as subjects, but as partners with a heightened sense of awareness into the science of what it is, exactly, that they’re signing up to do – and most important, the signifi cant impact it could potentially have on their lives and, ultimately, the future of medicine.

References

  1. The Center for Information & Study on Clinical Research Participation, Clinical Trial Facts & Figures, Information About Participation and Clinical Trials by Ethnicity, Age, and Gender, www.ciscrp.org/professional/facts_pat.html, accessed May 29, 2012
  2. Holden D, Health infl uences current trends in the use of the internet for health information, Bupa Health Pulse 2010, Online Health Untangling the Web 14: 2011
  3. Brescia BA and Bachenheimer JF, The Will & Why Survey, Examining American’s Motivation to Participate in Clinical Studies 1: 2003



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Aaron B Fleishman directs social innovation and patient engagement at BBK Worldwide, connecting the company and its clients to the dynamic online and advocacy communities of patients and caregivers. Aaron collaborates with the company’s media, creative and public relations staff to integrate traditional and new media strategies into patient outreach, education and support initiatives. Prior to joining BBK, he worked for PatientsLikeMe, an industry innovator in patient advocacy and clinical research. There, Aaron served as a Community Moderator for members with depression, bipolar or other mood disorders. He is a graduate of Hartwick College, NY.
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