Social media in clinical trials

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Visualization of a social network such as Facebook, 1/7th of the planet holds accounts
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Contents

Last Update

  • Updated.jpg 24 March 2017

Introduction

See also Consumer health 2.0 | Enterprise 2.0 | Digital sandbox for health care managers | Health 2.0 | Major clinical studies & trial types

"...The use of social media in supporting medical research is rapidly moving from experimental pilots to informed strategies. Indeed, an increasing number of companies and healthcare stakeholders are exploring how social media can support clinical trials activity, and as they do so, some interesting trends are emerging..." ~ Ghinn, 2012

Social networking through the use of Internet-based and other web media is fundamentally changing how health researchers do research and manage clinical trials. In 2012, social media is being used for clinical trial recruitment (Alison, 2009) and accelerating the testing of new drugs on patients (Wicks, 2011). The use of Facebook, LinkedIn and Twitter have become discovery platforms for health information and the empowerment of patients. Online clinical trial registries such as Clinicaltrials.gov and the International Clinical Trials Registry Platform (ICTRP), company-sponsored clinical trials websites, and patient recruitment companies have also had a hand in changing the clinical and patient landscape. Moreover, social media platforms provide a way to engage patients in global conversations about their health, emerging health threats such as West Nile Virus and other concerns in public health.

As more scientific work moves to the web, questions arise as to what aspects of social media are best suited to conducting clinical research. Since most trials are highly dependent on enrolling human subjects, can the web aid in the process? Historically, mass media has played a critical role in patient recruitment. But with the popularity of websites such as Facebook and PatientsLikeMe not to mention concepts such as health 2.0, the issue of using social media effectively for patient recruitment in clinical trials is moving way ahead of the discussion of any ethical frameworks needed to govern trials. The lack of an ethnical framework raises serious issues for scientists such as clinical trial confidentiality and patient privacy.

But where is the evidence to demonstrate the benefits of social media? Simply put, there is plenty of evidence showing that patients are using social networking sites to keep informed about their health. While contacting patients directly on these websites may be highly cost-efficient, they should not be viewed as replacements for traditional forms of patient accrual. Social media and networking sites provide access to millions of patients globally; but a lack of coherent engagement strategies can hamper recruitment. It would seem that researchers and physicians must try to understand this new ecosystem where patients now hang out, and where niche areas of health care are now located. The use of internet-based media to engage patients at the right time is self-evidence. Online patient communities represent perhaps the most obvious and newest route for patient engagement, but should not be viewed as a panacea.

See also Social media in clinical trials: benefits & challenges in a changing e-landscape. Sept 2012 & draft paper

Key points

  • Why social media? The term social media means different things to different people. However, there is general agreement that it involves online interactions between individuals who share common interests and activities. These interactions are facilitated by online networking websites like Facebook, microblogging platforms such as Twitter, video-sharing sites like YouTube, and a growing network of blogs, online bulletin boards, and e-forums
  • Social media is extremely popular worldwide; Facebook has over 1 billion users; 1/7th of the planet
  • Deployed to inform and educate the public about clinical trials
  • Develop cost-effective patient recruitment campaigns evn though they may initially have limited appeal
  • Patient experiences in clinical research should get picked up, and remixed
  • Rapid growth driven by mobile applications and portable device innovation
  • Embrace social meda as an increasingly important channel for educating patients about clinical research
  • Response often a reflection of online chatter, choice of social media and effective messaging
  • Importantly, social media can help expand pool of available research subjects; essential to viability of future clinical research and cost containment
  • mobile devices have prompted the development of clinical trial recruitment apps

YouTube recruitment

The Association of Clinical Research Organisations (ACRO) is a membership based organisation representing CROs providing trial services to firms developing pharmaceuticals, biologics and medical devices. It recently announced the launch of its YouTube channel (ACRO Health Channel) as part of its efforts "...to educate the public, media and policymakers about clinical trials and the growing role of clinical research organisations in the drug development process".

PatientsLikeMe - a 2.0 site with social reach

  • PatientsLikeMe is a social-networking site bringing together patients with similar health conditions, and an invaluable resource that taps into the fostering community aspect of social media for specific diseases; members share their medical histories, and can also share their personal health records (without identifying information)
  • PLM is a privately-funded company that supports patient recruitment for clinical studies by providing members with information about and invitations to active clinical trials
  • PLM currently has nearly 150,000 patients registered with over 1000 conditions (in 19 disease-specific communities)
  • PLM's business model emphasizes openness and transparency, and the sale of patient-shared experiences of illness to companies selling products such as drugs, devices, equipment, insurance and other medical services
  • PLM includes several online communities, patient data sources and information relevant to being a patient; categorizes patients into five illnesses: 1) amyotrophic lateral sclerosis (ALS), 2) Parkinson's disease, 3) HIV/AIDS, 4) multiple sclerosis and 5) mood disorders such as depression;
  • PLM sells information to drug, device, and insurance companies; buyers can mine data on a variety of chronic illnesses
  • Very useful for people who aim to find information about a health condition or disease, track symptoms and personal health information, and talk with others who have similar problems
  • Gathers demographic information, date of diagnosis, treatment options and self-reported outcomes. Some data, such as symptoms and specific drugs, are aggregated and tracked; patients include narratives in their diagnoses, treatment plans and beneficial or detrimental effects of drugs and other activities, such as exercise regimes, yoga, etc.
  • Answer simple questions to create a shared health profile to see how you’re doing over time. Find patients like you, search by gender, age, treatments, symptoms, and time since diagnosis to connect with patients. Learn from real-world treatment and symptom reports, forum discussions, health profiles, one-on-one conversations etc.

Recruitment

"...the recruitment of human subjects for clinical trials research is a critically important step in the discovery of new cures for diseases. Volunteers are subjected to an elaborate questionnaire process in current recruitment methodologies. Although the questionnaire process is extremely important in clinical trial recruitment, it is inefficient due to redundancy and lack of a systematic approach. Ideally, questionnaire generation and implementation must be guided by intelligent heuristics that minimize redundancy and inconsistency..."

In order to find patients to participate in your clinical trial via social media, define and know what the structure of the target group should be and then structure a strategy to incentivize them to respond. Although traditional media such as radio, television and newspapers are still used to reach potential patients, social media can also be deployed to recruit patients.

Pfizer's virtual clinical trials

Social media has been used by some pharmaceutical companies to promote their products and to engage patients in discussion about their health. Pfizer, for example, has developed a clinical-trial-in-a-box coupled with using social media and mobile applications for virtual clinical trials. In the digital age, patients now have a voice and in combination with social media tools can influence reimbursement procedures and the direction of clinical research. Pfizer’s chief medical officer has said that the company is trying to reduce barriers to participation in clinical trials. They also want to offer a consistently strong clinical trial experience that does not vary by location, and aim to save money for all concerned in conducting clinical trials. However, in mid 2012, Pfizer ended its experiment.

Some social recruitment examples

  • Army of Women (Love/Avon) http://www.armyofwomen.org/ ~ aimed at recruiting healthy women of all ages & ethnicities, breast cancer survivors and those at high risk
    Centerwatch.png
  • Centerwatch http://centerwatch.com ~ news, directories, proprietary market research, analysis for research professionals and patients
  • Clinical Connection http://clinicalconnection.com ~ connects 325,000 members with clinical trials worldwide; facilitates patient recruitment
  • Clinical Research http://www.clinicalresearch.com/ ~ biopharm company created site to increase clinical trial awareness
    Diabetic connect.png
  • Diabetic Connect http://www.diabeticconnect.com/ ~ online, caring social community. Ask diabetes experts, information and support
  • Emerging Med Navigator http://www.emergingmed.com/ ~ since 2000, a social website for patients searching for cancer trials
  • MediGuard https://www.mediguard.org/ ~ since 2007, a drug safety, recall & monitoring service; collects feedback from patients and shares reviews
  • Inspire http://www.inspire.com/ ~ since 2005, a national patient organization with partners, patients and advocacy groups to create online network
    Plm 130x96.jpg
  • PatientsLikeMe http://patientslikeme.com/ ~ social networking site where patient communities share experiences and post health data
  • Social Heart Study https://socialheartstudy.org/ ~ new social network-based project and research study that recruits patients on the Internet
  • Sermo http://www.sermo.com/ ~ since 2006, exclusive online community for physicians who post observations and questions about patient care
  • TrialX http://trialx.com/ ~ connects patients to clinical trials & develops innovative technologies & media to facilitate patient recruitment
    Trialx logo.png
  • 23andme https://www.23andme.com/ ~ genetic "spit-kit" testing for health, disease and ancestry DNA analysis

References

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