A Global Village
Issue 12 » Virtual Citizen

Advancing Health Research Through Online Social Networking

Fahdah Alshaikh, Imperial College London

The past decade has seen technology advance so rapidly, it’s almost difficult for industries and manufacturers to keep up. However, this technological shift has revolutionised the practice of medicine and healthcare with new treatments and medical devices launching at an ever-increasing rate. Alongside the development of new therapies, the recent explosion of internet-based communication and education tools has enabled practitioners and researchers to interact with patients in new and innovative ways. This has allowed the medical community to disseminate information, receive real-time feedback and collect data critical for scientific research.

Exploring and exploiting the opportunities made possible by new
technology is essential in all aspects
of research. The internet is particularly notable in terms of its ability to
reach a wide audience in a unique,
interactive and efficient way. For example, Social Net- work Sites (SNS) allow people all over the world, particularly in the younger age range, to communicate with one another. This intrinsic ability to reach out to young people, with the potential to collect data, has been little utilised in health research.

SNS have gained a lot of attention from consumers and advertisers, including health organisations, in the recent past. However, whilst SNS is recognised as a powerful tool for communication; the question is raised, ‘How effective can SNS be in engaging and reaching youth for health research and health surveys?’

eHealth
Since its emergence, the internet has grown to be an invaluable tool in healthcare. Demand from consumers for information about health and well-being has led to the establishment of a range of online regulated healthcare organisations whose aim is to provide accurate and clinically valid information. Methods of delivery of such information often include a range of media including short videos or images depicting conditions and treatments.

Demand from consumers for
information about health
and well-being has 
led to the
establishment of a range of
online regulated 
healthcare
organisations whose aim is to
provide accurate 
and clinically
valid information

Online healthcare technologies also provide an opportunity for active communication between patients and health professionals, either via private messages (email) or publicly through forms and fan pages. For ex- ample, SNS users may spread health information and advertise surveys about health care by updating their status or by showing participation on their profiles. Another key feature of SNS is its ability to allow community interaction. Family members of patients can be involved, ideas can be shared and people can support one another. On the other hand, as the community is virtual, no geo- graphical barriers apply. One such example of online patient interaction is Patient Opinion, a website developed by the Nottingham Healthcare NHS Trust1, which provides an online forum for patients to share information on their health problems and questions about treatments with other patients, as well as qualified medical personnel.

The #nomakeupselfie campaign for breast cancer garnered thousands of enthusiastic followers raising awareness of the disease.

Social Surveys
Allied to the dissemination of health information, and the facilitation of interaction between patients and the healthcare industry (and other patients), online technology can also play a role in health research.

Healthcare organisations undertaking survey-type research usually collaborate with a research institutions, as the latter are
specialists in setting up; running studies; analysing data and reporting findings. For example, research surveys
typically require health researchers to
communicate with participants and
send them a survey to be completed
and returned by a set date. This mode
of communication is predominantly
‘one way’ as participant feedback may
be missed due to difficulties in reaching consumers or issues with response
rates. Also any additional participant
feedback may not be deemed useful for research purposes, and is hence disregarded.

However, using SNS as a mode of communication between researchers and participants allows participants to communicate with one another and with the com- munity, generating more widespread interest. Participants are able to answer surveys anonymously as responses are unidentifiable, which in turn will encourage more truthful responses. Participant feedback is instantaneous, updated quickly, and easily processed and analysed. The researcher also has the opportunity to monitor the whole process in real time, quickly correcting any anomalies.

One of the key advantages of SNS surveys is their ability to reach a worldwide audience, and target specific groups easily e.g. for gender, age range, or ethnic origin. Researchers are able to filter results and exclude those responses that don’t meet inclusion criteria e.g. exclude responses by participants out- side of specified age range. SNS surveys may also be adaptive, i.e., if participants choose gender ‘male’ then they are not asked any female related questions e.g. ‘Are you pregnant?’. Essentially this form of data collection allows secure and adaptive interaction between all parties involved.

SNS surveys may also
be adaptive, i.e., if
participants 
choose
gender ‘male’ then
they are not 
asked
any female related
questions e.g. 
‘Are
you pregnant?’

From an economic perspective, cost, survey duration, resource availability and appropriateness of survey mode need to be taken into account. SNS surveys may be comparatively less costly to undertake when compared with traditional paper-based surveys especially if one is interested in comparing responses between large regions or even countries.

Challenges
It is critical for health providers and researchers to understand the potential that SNS holds for enhancing health communication in order to harness and subsequently apply this technology effectively.

The most important aspect of SNS is the ‘start up’ stage; devising an appropriate survey; setting up the site; initial advertising; generating and maintaining interest thereafter. Hence it is essential to meticulously plan each stage with clearly defined inclusion criteria, to use accurate and reputable information sources for site content and ideas to generate discussion amongst participants. Furthermore, all surveys whether electronic or paper-based need to consider the nature and level of detail of information to be collated, to avoid capturing any participants’ identifiable information un- necessarily. This will be one of the toughest challenges facing SNS-based health research, and will require rigorous ethics approval and deliberate attention to con- sent, confidentiality, and security2.

Finally, SNS-based surveys are limited to ICT literate people with a SNS account, and are particularly appropriate when targeting a younger generation. It is perhaps better to use paper-based questionnaires if targeting an older audience not as fluent with ICT. However, as the number of people using electronic media increases, this mode becomes more and more appropriate and should be considered by researchers when designing future survey-type studies.

Fahdah Alshaikh is a doctoral researcher at Imperial College London interested in the use of Social Network Sites in research and health promotion. 

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[1] Patient Opinion (Nottingham Healthcare NHS Trust). [online] Available at: https://www.patientopinion.org.uk/ [Accessed 15 February 2014].
[2] Bull et al (2011) Case study: An ethics case study of HIV prevention re- search on Facebook. (Journal of Pediatric Psychology). 36(10):1082-92