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International Clinical Trials
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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
- 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
- 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
- Brescia BA and Bachenheimer JF, The Will & Why Survey,
Examining American’s Motivation to Participate in Clinical Studies 1:
2003
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