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International Clinical Trials
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Using social media as part of a patient recruitment drive may be growing
in popularity, but the approach might not suit every study. A
feasibility model, based on a three-step framework, can provide clarity.
The growth of social media has been phenomenal. In 2005, a mere five per
cent of US adults used social media, but by 2011, that number had
exploded to 50 per cent (1). Despite this growth, few adults reported
using social media for online health information seeking – that is,
until very recently (2).
A newly published survey revealed that a substantial portion of US
consumers now use social media to obtain health information on a variety
of topics (3). Most notably, 42 per cent of adults reported viewing
health-related consumer reviews, making it the most popular of reported
activities.
Furthermore, health information gathered via social media is
increasingly affecting healthcare decisions. For example, 45 per cent of
US consumers reported that social media was likely to influence their
decision to seek a second opinion from another doctor. As well as this,
42 per cent reported that social media was likely to affect how they
cope with chronic pain or a condition (3). Similar trends have been
observed in other countries as well.
Because of social media’s popularity and influence, it is garnering much
attention among clinical researchers – and so it should. Given the
challenge of patient recruitment, clinical researchers cannot afford to
ignore any avenue that might expand the pool of potential research
participants. However, the numbers don’t tell the whole story.
The Challenges of Social Media
The sheer popularity of social media is not sufficient to justify its
use for clinical trial recruitment. Heavy user adoption of social media
is by no means a guarantee of access to social media users. A few key
barriers to access must be considered.
First, social media user attention is scarce; as social media use has
grown, so too has the competition to capture the hearts and minds of
social media users. This competition has created an unprecedented amount
of noise, thus causing social media users to be very discerning with
their attention.
Second, trust is an essential ingredient to social media success, but it
is difficult to earn. This statement is true with all social media
marketing, but it is particularly true in patient recruitment. Many
consumers are understandably cautious with regard to the privacy and
security of electronic health information (4).
Third, social media’s inherent nature is not aligned with traditional
patient recruitment practices, thus requiring a shift in perspective and
processes by clinical researchers. As a form of permission marketing,
social media requires that access to users be earned. This mindset is in
stark contrast to the interruption marketing approach of patient
recruitment advertising, where access is purchased (5). Furthermore, the
conversational tone of social media is difficult to engage in given the
regulatory and IRB restrictions of clinical research.
These challenges are significant, but worth attempting to overcome.
Social media has the potential to transform patient recruitment,
providing a better experience for clinical researchers and patients
alike. However, that transformation won’t occur in the way that many
believe.
The Potential of Social Media
Before understanding the potential of social media, it’s important to
understand what characteristics make social media unique. These
characteristics include user-generated content, community and
interactive dialogue (3). Note that online advertising does not fit this
profile, so it does not qualify as social media, even when ads happen
to appear on a social media platform such as Facebook.
This distinction is important because social media, as a form of
permission marketing, requires an entirely different approach from
advertising. Social media’s greatest strength resides in an ability that
has largely eluded advertising and other interruption marketing
mediums. Put simply, social media is unique in its capacity to help
users know, like and trust others. This is clearly a capability clinical
researchers could use.
Clinical trial awareness remains a huge barrier to patient recruitment,
and even where awareness exists, misconceptions and distrust of clinical
research often remain. Contributing factors to distrust and
misconceptions include negative experiences with the healthcare system, a
perception of participants as ‘guinea pigs’, and negative press about
clinical trials (6).
Meanwhile, study staff play an essential role in patient recruitment and
retention. Study participants’ relationships with research staff
greatly influence their decision to initiate and complete clinical trial
participation (7). However, when lack of awareness and distrust inhibit
patient contact with clinical researchers, staff have no opportunity to
forge a connection with patients and overcome barriers. Thus, research
participation never becomes an option for many patients.
To widen the pool of research participants, researchers need an avenue
to begin forging this connection before participants inquire about a
particular study. And therein lies social media’s potential. Social
media is a low commitment way for patients to increase their comfort and
connection with clinical research and study staff. Because social media
allows patients to connect earlier in the patient recruitment process,
it could have a profound impact on recruitment.
Despite this potential, now is not the time to blindly or arbitrarily
use social media for patient recruitment. Social media is not an easy or
quick patient recruitment fix. Nor is it without significant
challenges. Like any tool, social media is only as good as its
appropriate application, and in the current climate, clinical
researchers need to be extremely selective about social media’s use for
patient recruitment.
Feasibility Model
The difficulty, of course, is in selecting the most suitable situations
for social media use in patient recruitment. Many clinical researchers
are confused and overwhelmed by social media’s potential and challenges.
To create clarity, clinical researchers need a systematic framework to
hone in on key variables and assess social media’s viability for their
project.
A social media feasibility model can provide the necessary systematic
framework. It should incorporate marketing fundamentals such as
demographics, as well as considerations specific to social media and
patient recruitment. In cases where social media is determined to be a
viable patient recruitment option, this feasibility framework can serve
as a foundation for social media strategy, thus positioning the project
for success.
Use of such a model requires collection of a variety of quantitative and
qualitative data, as well as reflection on the particulars of the
project. In some cases, information about specific areas will be
lacking. Even so, it’s better to identify those areas as unknown
variables, rather than be completely unaware of their potential impact.
A basic overview of such a model is provided here, including a
description of three major assessment areas focusing on patients,
abilities and preferences. These assessment areas should be researched
and addressed in order. The bulk of time and energy should be spent on
the first area: assessment of patients.
Assessment of Patients
To begin the patient assessment, start by understanding who the target
patients are (see Table 1). Determine which demographics are most
strongly associated with the patient population, considering variables
such as gender, age, race, socioeconomic status and geography. Remember
that in some cases, the primary audience may be a caregiver. Demographic
variables often influence patient health information seeking behaviour,
particularly with regard to social media. For example, women and
younger audiences tend to be particularly enthusiastic users of social
media when seeking health information (2,3).
In addition, it is important to assess the target patient population’s
geographic location. A social media presence will need to reach people
in the geographic areas from which participants are needed. In the case
of a remote or virtual study, geography is less of a consideration
because fewer geographic limitations exist.
Consider the target patient population’s psychographics, accounting for
variables such as interests, activities, opinions and lifestyles. These
variables influence online behaviour because they determine where and
how people interact with information, both online and offline.
Assess the health status of the patient population and consider how
people with that status are likely to interact with health information.
In particular, make note of whether the target population is healthy or
has a chronic, acute or rare disease. Also consider relevant comorbid
conditions. All of these variables impact online health-seeking
behaviour. Rare disease patients, for example, are particularly
motivated and engaged online health information consumers (8).
Second, research where the target patient population congregates.
Location is key; determine if patients gather on mainstream social
sites, patient forums and communities, advocacy groups, blogs or other
areas. Also consider the online concentration and organisation of the
patient population. When patients have self-organised into concentrated
online pockets, fewer patient recruitment resources are required to
reach them. Furthermore, the viral nature of social media is easier to
make use of when the target audience is organised and concentrated.
Third, research how the patient population prefers to be engaged.
Consider their preferred type of content, tone of content, timing and
frequency of interaction. These engagement preferences determine the
ideal delivery of your patient recruitment message.
Now that a patient profile has been developed, including who the
patients are, where they congregate, and how they engage, consider these
questions:
- Are these patients using social media? Will they be receptive to receiving patient recruitment information via social media?
- Is social media a good avenue to reach these patients? Are there better avenues?
- Do these patients engage in social media? Am I willing to engage them in the way they prefer?
By pondering these questions in relation to the information gathered, a
decision can be made as to whether social media is a good avenue to
reach the desired patient population.
Assessment of Abilities
Now it’s time to assess your own abilities (see Table 2). Firstly, do an
inventory of social media assets that are potentially accessible. Note
assets within your organisation and that of your research partners. Also
note social media assets that may be accessible in other organisations,
including those on mainstream social sites, advocacy sites, patient
forums and communities, and blogs.
If internal social media assets are found to be lacking, consider
whether new assets should be strategically developed for use with future
projects. Making such a decision is beyond the scope of this
discussion, but it is something to consider.
Secondly, make note of relevant rules and restrictions regarding social
media and patient recruitment, with particular attention to the
Institutional Review Board (IRB), regulatory and organisational
restrictions. IRB’s views on social media vary widely. Some IRBs are
very receptive to social media, while others are far more uncomfortable
and restrictive as a result. Communicate with IRBs as early as possible
to determine their individual policies.
With an understanding of these restrictions in place, determine the
level of engagement that can realistically be applied. From least
engagement to most engagement, these levels include listening,
participating, engaging, and extending the experience for retention and
loyalty.
Thirdly, consider the desired enrolment timeline. A social media
presence is better suited for long-term timelines, but social media
listening can be done in a relatively short timeframe. Now that ability
has been assessed with regard to social media resources, engagement and
timeline, consider these questions:
- Are these social media resources sufficient? Do they overlap with where patients congregate?
- Given my ability, can I engage with patients at the level they would prefer?
- Can my social media options be executed on the timeline required
Assessment of Preferences
With a clear assessment of both patients and abilities in place, begin
the third and final framework stage (see Figure 1). Contemplate your
preferences, with particular attention to two big factors. Initially,
consider your preferred budget, both in terms of patient recruitment as a
whole and that of social media specifically. Then move on to thinking
about your desire to innovate and your tolerance for risk.
These preferences will be used as a lens to further analyse the other
two stages of the framework, allowing a final determination to be made. A
larger budget, desire to innovate and tolerance for risk indicate the
need for a more optimistic view during final analysis of the insights
gathered. On the other hand, a lower budget, a lack of desire to
innovate and low tolerance for risk indicate the need for a more
critical view while analysing insights.
Though the first two parts of this feasibility framework are designed to
bring some clarity regarding social media, its status as an emerging
patient recruitment method still carries uncertainty. Compared to more
traditional recruitment methods, little data about social media exist.
This final stage is intended to account for your ability and desire to
forge ahead in that uncertainty.
If social media is determined to be viable for a project, the research
and thought put into this feasibility assessment will strongly inform
social media strategy, thus positioning that strategy for success. On
the other hand, if social media is determined to be non-viable, use of
this model will have prevented frustration and wasted recruitment
resources.
Conclusion
Social media is an increasingly popular online activity, and it is beginning to have an impact on consumer
healthcare decisions. Because of its unique qualities, social media has
the potential to transform patient recruitment, improving the experience
for patients and researchers alike. However, significant barriers to
social media’s use in patient recruitment remain. Also, social media is
certainly not right for every patient recruitment situation. A threepart
feasibility model provides clinical researchers with the systematic
framework needed to determine social media viability for particular
projects. This framework ensures that clinical researchers make informed
and strategic decisions regarding the use of social media for patient
recruitment.
References
- Madden M and Sickuhr K, 65 per cent of Adults Use Social
Networking Sites, August 2011, available at http://pewinternet.
org/Reports/2011/Social-Networking-Sites/Overview.aspx, accessed 23 May,
2012
- Fox S, The Social Life of Health Information, May 2011, available
at www.pewinternet.org/Reports/2011/Social-Life-of-
Health-Info/Summary-of-Findings/Section-1.aspx, accessed 23 May, 2012
- Health Research Institute, Social Media “Likes” Healthcare: From
Marketing to Social Business, April 2012, available at
www.pwc.com/us/en/health-industries/publications/
health-care-social-media.jhtml, accessed 27 May, 2012
- Deloitte Center for Health Solutions, 2011 Survey of Health Care
Consumers Global Report, 2011, available at www.deloitte.com/
assets/Dcom-UnitedStates/Local per cent20Assets/Documents/
US_CHS_2011ConsumerSurveyGlobal_062111.pdf, accessed 29 May, 2012
- Godin S, Permission Marketing: Turning Strangers into Friends and Friends into Customers, pp10-25, 1999
- Frank G, Current Challenges in Clinical Trial Recruitment and
Patient Enrollment, SoCRA Source, pp34-35, February 2004, available at
www.socra.org/pdf/200402_Current_Challenges_ Recruitment_Enrollment.pdf,
accessed 22 May, 2012
- Getz K, Conversations with Study Volunteers, Applied Clinical
Trials, May 2010, available at www.appliedclinicaltrialsonline.
com/appliedclinicaltrials/article/articleDetail.jsp?id=668513&p
ageID=1&sk=&date, accessed 20 May, 2012
- Fox S, Peer-to-Peer Healthcare, February 2011, available at
www.pewinternet.org/Reports/2011/P2PHealthcare.aspx, accessed 30 May,
2012
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