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International Clinical Trials

The Era of Digital Medicine

As the biopharmaceutical industry scrambles to improve drug pipelines, social media is helping to ramp up patient recruitment for clinical trials, explains KK Rumrill of BBK Worldwide

The internet places unmatched communications tools and tactics in the hands of global clinical trial sponsors that can profoundly affect patient recruitment for multinational clinical trials. Likewise, patients themselves have unprecedented access to medical and research study information – and some of their most trusted resources are the experiences of their peers.

From market research ‘listening’ projects, to centralised web outreach, to condition-specific web-based patient communities, online media and social networks empower clinical trial sponsors to reach prospective study participants with ever-evolving precision. Yet, it can all seem complex and unwieldy at times as the industry learns how these new tools can really work across indications and regulatory environments.

Mergers and acquisitions may be the quick-fix for bulking up biopharmaceutical pipelines. Yet speed, cost-efficiency, and streamlined infrastructures also remain pharma industry priorities. As such, internet-based patient recruitment, enrolment and retention initiatives are proving increasingly effective in both mature and untapped global markets and have become an inescapable consideration for raising awareness on the clinical research frontier.

WHAT IS SOCIAL MEDIA…REALLY?

It’s difficult to define social media; labelling it with a comprehensive defi nition might be as hard as stabilising global currency markets. But let’s face it: the desire to share feelings, opinions, and personal information are fundamental elements of our need to relate with each other and feel understood. And social networking’s place in the healthcare arena is just as natural as telling a friend or family member when you’re not feeling well or reaching out to get their opinion about a general practitioner.

In its most rudimentary, technical form, social media is a communications platform that rapidly facilitates knowledge transfer via the internet. From a more philosophical perspective, social media is a virtual extension of peoples’ personal lives. For some, it is a more controlled environment removed from the pervasive din that mass media creates in modern, everyday life. From this perspective, social media can become a refuge for those who want to get to the heart of the matter, whatever the subject may be, as the opportunities to encounter and engage specific healthcare information online are expanding by the minute. Also, clinical research sponsors are beginning to understand that they must embrace this reality to stay relevant and competitive.

Major types of global social media outlet include:

  • Networks: Facebook®, MySpace™, Orkut, Friendster, Bebo, LinkedIn™
  • Blogs: Twitter™, Blogspot 
  • File sharing: YouTube, Vimeo, Last.fm, Flickr
  • News: Reddit.com, Digg.com
  • Wikis: Wikipedia and other ‘open’ encyclopaedias

SOCIAL MEDIA & PATIENT RECRUITMENT

The emergence of social media as a source of information and education for healthcare consumers has opened the door particularly wide for the patient recruitment industry. It is not just another recruitment tactic: it’s a whole new communication model.

Study opportunities can be added to active healthcarerelated conversations and discussions, and sponsors can join and bring information to online interactions already taking place among patients. These patients actively seek the latest information regarding their condition. Since patient recruitment remains the biggest bottleneck that hinders and stalls clinical trials, the real-time information exchange between patients and the multiple new outreach venues for informing them has revolutionised the industry.

However, it’s important to note that social media alone is not a communications panacea for patient recruitment. Rather, when utilised in tandem with other traditional and high-impact media channels – and especially as a market research tool – media strategy, planning and tactics can be implemented with unprecedented precision and resonance.

“The problem is that the internet has mainly been an ‘active’ medium and so it can favour those who have a mission and are purposefully seeking clinical trials,” said Joseph Kim, clinical operations director at Shire Pharmaceuticals. “While it is true that sophisticated technologies exist, such as contextual advertising, to expose information of interest to those who may not be seeking it at that moment, I would still say that paid search, search engine optimisation (SEO), and ads remain the best current uses of the internet for patient recruitment,” Kim said.

While we’re better able to reach and serve our given target audiences, there are opportunities to utilise all that comprises social media to improve each stage of the drug development process and the launch of better treatment alternatives as they are approved. But as we have always put the patient first, we can now do it better than ever and across nearly any therapeutic category, because whatever the unmet medical need, people are sharing what they know somewhere on the web. And if it’s wrong, misunderstood, or incomplete, then we have the opportunity to address it – and quickly.

“Social media has also been a hot topic right for a few years now, but what currently passes for social media driven patient recruitment tactics are things like Facebook ads or a trial opportunities endorsed by online patient communities, which are, regardless of their effectiveness, still just ads. Aside from these things, access to rich media and e-consenting applications to help patients more thoroughly understand the clinical research process may prove to encourage participation as well. In addition, given the high prevalence of mobile devices in the EU and eastern Europe, many of which are smart phones, one might fully expect a high percentage of mobilefriendly internet based strategies to play rather well across the EU if not today, then in the very near future,” Kim said.

 

TO UNDERSTAND YOUR AUDIENCE, BE A GOOD LISTENER

The days of the expensive focus-group-driven market research initiatives are fading. To truly understand the patient perspective on any given condition, we no longer need to sit behind the mirror to observe focus groups in cramped rooms across the globe. We simply need to listen.

Altruism, goodwill, compassion and support are all alive and well on the web through virtual patient communities that impact the lives of many millions around the world every day. From these communities, we gain an understanding of patients’ daily lives and struggles, their therapeutic experiences and misgivings, and desires for improving their health and the health of their families and friends. To this end, sophisticated social media research tactics, including ‘listening projects’, now allow us to target, observe and analyse this activity – yielding crucial guidance for everything from protocol design to study-related outreach.

Social media users’ online activity provides unprecedented amounts of information regarding:

  • Where potential study participants meet, talk and interact on the internet
  • The topics they discuss
  • The language they use to converse with one another

When data like this is analysed, sponsors can nearly ‘step through the looking glass’ and refi ne protocols, select study countries and research centres, and implement outreach programmes that better resonate with potential study participants – a sure means to achieve timely and cost-effective patient recruitment. Well-executed listening projects can inform precision media decisions, from outreach messaging to web tactics and more, and the impact on enrolment timeframes can spell cost-savings in the short term when studies enrol quickly.

INFORM: REACHING YOUR TARGET AUDIENCE

Thanks to the keen personalisation of most users’ online lives, social media channels can be used to deliver extraordinarily targeted recruitment messages. Once listening projects yield detailed data on factors such as the media consumption habits of the target audience, study sponsors and their recruitment partners can deploy dynamic media strategies to maximise reach and incite a strong call to action for patients to consider clinical trial participation. Based on the incidence and prevalence of the indication, the diversity of the patient population, or even the physical placement of study sites, there are many varied means of targeting social media advertising:

  • Behavioural targeting – advertising served to users based on content they search
  • Contextual targeting – adverts displayed only within specific content on a specific website
  • Demographic targeting – specific messaging distributed based on gender, age, income, employment, and so on, used to particular effect on sites where personal profi les are created (for example Facebook)
  • Geographic targeting – postings restricted to individuals based on precision factors such as cities, countries, postal codes, or even distance from a given investigative site

“When you examine every data point for a particular audience and every cost consideration and concern that a sponsor may have, and every factor infl uencing a project timeframe, the media planning and implementation that we’re able to accomplish through social media is unprecedented,” said Justin Jones, communications specialist at Agency320, a global creative consultancy and media solutions agency that specialises in patient recruitment for clinical trials.

“We can approach an audience from any angle and deliver messaging that is tailored to reach them wherever they may be in the world,” Jones continued. “And we can further refi ne the delivery to reach the audience when they may be most receptive – all based on the knowledge of how they access and utilise media. So whether it’s employing traditional media avenues such print, TV, and radio advertising, mail shots or the latest in online social media, Web design, and search engine marketing, we can deliver the prospective study participant candidates better than ever,” Jones said.

ENGAGE: GETTING STUDY OPPORTUNITIES INTO THE CONVERSATION

Engagement is why social media users become users in the first place, and many view this facet of their experience as an extension of where they ‘live’ and how they connect with others. Social media platforms empower patients to seek specific answers beyond what their doctor may have told them by connecting individuals who live with and perhaps suffer through similar health conditions or diseases. Short of seeking a ‘second opinion’, they can gain perspective though the experiences, knowledge and opinions from perhaps even more trusted sources: their peers.

The real driving force behind the vast majority of social media traffic is engagement. This means plugging into the interactive features of social media that defi ne the channel for most users, whether it is advertising on Facebook or reaching out to those who have opted-in to receive specific health information as part of their participation in an online community. It means introducing study-related messages directly into the venues where members of a target patient community can be found, and allowing those community members to discuss, distribute, and interact with those messages the way they naturally would with any other content.

For PatientsLikeMe®, a company dedicated to making a difference in peoples’ lives through its online community, engagement is centered around the patients’ sharing of health data and experiences. Co-founder and Chairman Jamie Heywood said, “Patients are giving us data and we need to honour that by helping to advance the understanding of their disease, their cause, and their power in the world to make the medical system about them.”

Whether raising awareness of potential options for those who may have reached the limit of what approved medicine has to offer, or simply to gain perspective on patient quality of life issues to that may influence protocol designs, these are key patient engagement scenarios for pharmaceutical sponsors where opportunities exists to effectively and – perhaps most importantly – compassionately introduce potential study opportunities into patient conversations.

For their part in that dialogue, PatientsLikeMe is home to more than 115,000 patients with more than 1,000 conditions who are sharing health information on the site. “I think what’s exciting is the scale that we’re operating under,” said Paul Wicks, Research Director at PatientsLikeMe. “We recently received survey responses for 4,000 patients in one week. That is unparalleled power in the research world.”

With more than 2,000 members who live in the UK and a number of European-based pharmaceutical partners, PatientsLikeMe was recently recognised by United Kingdom Trade & Investment organisation (UKTI) with a ‘Go for Gold UK’ award. This financially supports PatientsLikeMe to continue its work with people, government and businesses in the UK.

“With the support of funding from UKTI, we’ll be able to expand on our outreach efforts amongst healthcare stakeholders in the UK,” Wicks said. “And as the UK moves toward a more patient-centered and interconnected National Health Service (NHS), we’re excited to be in the position to provide services to general practitioners, hospital specialists, and commissioning bodies to help to improve patient outcomes. I think the support from UKTI will help us take NHS services for patients with chronic conditions to the next level.”

ETHICS CONUNDRUM: REGULATION WITHIN AN INHERENTLY ORGANIC ENVIRONMENT

From a regulatory perspective, social media no longer poses theoretical questions for pharmaceutical sponsors and regulatory ethics committees around the world. Patients already treat social networks and portals as healthcare resources – whether regulatory or commercial authorities are involved or not. And connecting these patients with new study opportunities will mean developing recruitment methods that play by the rules collectively established by these hundreds of millions of users.

The European Medicines Agency and the European Commission have made strides to issue guidelines for social media use and the protection of personal data. Particular emphasis has been placed on protecting children and young people from problems such as cyber-bullying, privacy violation and exposure to harmful content. The Social Networking Service (SNS), in collaboration with the European Commission, called for a collaboration on this effort in a recent directive between parents, teachers, governments and law enforcement, as well as civil society as a whole.

While noble in its scope, a practical call to action has yet to emerge in similar detail regarding social media and clinical research endeavours. It’s not surprising, considering that the US Food and Drug Administration, the powerful overseer and bureaucratic watchdog, has itself yet to issue promised guidelines on social media. The difficulty of such a task is perhaps a testament to the ever-fluid evolution of social media and the challenge of defining an ever-evolving new communications medium.

So with many hurdles to clear, and perhaps many threats to avoid, the next step will be to address some key questions regarding the utility and usage of social media across the many regulatory environments at play for multinational studies: from country to country and even site to site. In particular, how do sponsors engage with patients via social media in ways that accommodate differing defi nitions of what constitute justice, beneficence and respectfulness on social media? Likewise, how do regulatory bodies establish a reasonable and practical method for reviewing, guiding and monitoring that engagement? Transparency, integrity and evolution of thought are the core principles of social media platforms. Whatever guidelines emerge, there will be an inherent confl ict in trying to control and alter a landscape that is destined to perpetually shift on its own.

CONCLUSION: PLAN… THEN LISTEN, INFORM & ENGAGE

Online health information platforms exponentially increase exposure and access to prospective study volunteers. One might even say that our presence in targeted online venues legitimises study opportunities for 21st century patient audiences. As establishing an online presence takes time and can be costly in terms of advertising and media outreach, social media must be carefully researched. Online media spending should be targeted based on precision planning to ensure that optimal messages reach intended audiences.

Social media will be an ever-evolving component of patient recruitment for clinical trials for the foreseeable future. But with as many potential pitfalls as opportunities, it is vital for sponsors to stay informed and proceed, however cautiously, with an online strategy for connecting with patient audiences. Patients will share their opinions, including negative clinical trial experiences, and may even comment on adverse drug events in online forums whether you join them in the online environment or not. Before long, sponsors will not have a choice whether to participate in social media. Only decisions about how, when, and where to incorporate online programmes into the clinical research enterprise will remain.


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KK Rumrill directs client services for BBK Worldwide, the global leader in patient recruitment for clinical research and development. She supervises strategic implementation and execution of clinical trial recruitment programmes in more than 70 countries. Throughout her 20-year tenure with the company, KK’s leadership has helped guide BBK’s global growth and expansion – integrating innovations in media, technologies and investigator services. Email: krumrill@bbkworldwide.com
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