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Digital Connectors

It is hard not to be moved by the story of e-Patient Dave. Diagnosed in 2007 with an advanced case of kidney cancer, which had metastasised and spread to his bones, lungs and muscles, his outlook was grim. Fortunately, Dave deBronkart – as he is known offline – had access to expert medics at a Harvard Medical School teaching hospital. He had surgery there and took part in a clinical trial of an investigational therapy now marketed as Proleukin. Eight months after his diagnosis, he was clear of the disease.

A pivotal stage of Dave’s journey was preparing for the clinical trial. He had already joined an online kidney cancer community. Knowing the drug could lead to severe side-effects, he asked his peers if any had been on the trial, and received 17 replies describing a range of experiences. The shared insights were critical to Dave’s successful response. He coped with the side-effects because he knew what to expect.

Dave says the community’s advice may have saved his life. Indeed, his story is a striking example of how e-Patients, sharing health-related information online, can drive positive experiences in clinical trials.

Appetite for Information

The term e-Patient describes anyone who actively looks for health information online. Clearly, Dave deBronkart is not your average e-Patient. He travels the world to deliver keynote speeches; his online TEDx video has been viewed almost half a million times; he has 17,000 Twitter followers.

But what all e-Patients have in common with Dave is a robust appetite for information and news on all things health-related. Some 72 per cent of internet users look online for health information (1). More than 60 per cent of e-Patients visit an online health community either daily or weekly (2). And one-third of videos watched on YouTube are about health; that is more than the viewing figures for food and celebrities (3).

The statistics are at once encouraging and frustrating. Despite the desire for health information and the growing numbers of clinical trials, public awareness of how to take part in medical research remains limited.

People are interested in principle: 87 per cent of respondents to a survey by the Center for Information and Study on Clinical Research Participation (CISCRP) said they would be ‘somewhat willing’ or ‘very willing’ to participate in a clinical trial (4). Earlier research showed the main reason people do not take part in clinical trials is simply that they are unaware of opportunities to do so (5). All the while, clinical programmes are falling behind schedule: 75 per cent of Phase 2 to 4 trials are delayed due to problems with patient recruitment (6).

Boosting Recruitment

Could there be an opportunity to boost clinical trial recruitment by delivering more patient-friendly information over the internet? The answer is an unequivocal yes – and for three reasons.

Firstly, the volume of information created and shared online is on a sharp upward trajectory. It is expected to reach almost eight zettabytes by 2015, up from around two zettabytes in 2011, according to the research firm IDC (one zettabyte equals one trillion gigabytes) (7).

Secondly, more people are gaining access to the internet. A Eurobarometer study across 15 European Union member states found that almost all patients are accessing health information online, directly or through friends and relatives (8).

Thirdly, we have reached a tipping point: patients are now informed about trials online more than through any other channel. Some 46 per cent of respondents to the CISCRP survey said they had found out about trials over the internet, compared with 39 per cent who got this information from the media (see Figure 1) (4). Only 20 per cent were told about trials by their primary physicians and the same percentage by speciality care physicians. The last time such a comprehensive study was published, in 2004, 44 per cent of patients said they had learnt about trials from the media, compared with 25 per cent from the internet (9).

Miles Galliford, a digital strategist, predicts that well over half of all patients will be recruited through digital channels within one to two years. “The methods of digital recruitment are still in their infancy, but they will rapidly develop over time,” he says. “Very soon the whole trial process will be managed via digital channels, from recruitment to real-time feedback on patient conditions through wearable monitoring devices.”

Dedicated Sites

Potential trial participants can be targeted online through dedicated websites that inform them about the relevant condition, social media channels, geo-targeted advertising and online communities (see Figure 2). Amid this mix, online communities hold by far the most promise for the future of clinical trial recruitment.

The best ones deliver high-quality content, informed by patient interest and input. They are platforms where patients can speak to each other; some of these conversations may include clinical trial experiences. Patientslikeme.com is one of the best-known examples. Since it was founded in 2004, its network has grown to more than 1,500 disease communities, with a total of over 200,000 members. They use the platform to keep track of their own health and to see aggregated data collected from others with the same diseases.

Some communities are run by enterprising e-Patients. Sean Ahrens was diagnosed with Crohn’s, an inflammatory disease of the digestive tract, at the age of 12. He went on to found crohnology.com, a social network for people with Crohn’s and colitis, a related condition. His network has almost 4,500 members worldwide, representing more than 28,000 years of collective patient experience. Similarly, Jan Geissler is a German e-Patient who took part in a clinical trial in chronic myeloid leukaemia (CML). Dissatisfied with the lack of online German information about new treatments, he established a patient community, leukaemie-online.de, and became a leading CML patient advocate.

Other online health communities are managed by specialist agencies. Tudor Reilly Health, for example, has launched three within the past year alone: practicalalzheimers.com, hepatitiscnews.com and bingganzixun.com.

Content Demand

Of course, running an effective online community comes with challenges. It is wrong to think of them as mere websites. A true online community is a vibrant, living and breathing entity that continues to evolve. Its success depends on quality content and the trust and participation of members, which take time to build and cannot be taken for granted. Spoilt for choice when it comes to online health resources, e-Patients need to feel that a community is relevant, current, credible and useful to them. Failure to deliver compelling and regularly updated content will mean many visitors do not come back.

It should be possible to post new content, such as blogs and videos, to pharma-sponsored disease awareness websites, but the process can take months of complex approvals. This is hardly in the spirit of social media, with its near real-time interactions. In terms of dynamism, pharma-sponsored websites are the polar opposite of patientslikeme.com, crohnology.com and leukamie-online.de.

Digital Trends

As digital recruitment channels continue to diversify, clinical trial sponsors and their contract research organisation partners may realise that they do not have the internal capabilities to effectively engage with and recruit patients online. One response may be to buy in the requisite talent: witness PPD’s recent acquisition of Acurian, a recruitment and retention specialist. However, a more likely scenario will see sponsors outsourcing the entire patient engagement function – from website and content creation, to the management of online communities – to specialist providers that are independent, nimble and better positioned to innovate.

A second trend will be a growing acceptance that medical knowledge is no longer restricted to the medically trained. e-Patients will increasingly expect their doctors to treat them as partners. Addressing delegates at this year’s annual meeting of the European Forum for Good Clinical Practice, German e-Patient Jan (Jan Geissler) said shared decision-making between patients and doctors would improve outcomes and efficiency, adding: “Roles are not only shifting, but they are flipping around.” (10).

Dave deBronkart is also a vocal advocate for participatory medicine. He wants doctors’ surgeries to employ information coaches to help patients get better at finding accurate health information on the internet (11). Doctors will have to become comfortable communicating with e-Patients, who are better informed than previous generations. Dave first joined his online kidney cancer community on the recommendation of his primary physician. Forward-thinking and open to patients sharing experiences with each other, Dave’s doctor might be described as an early-moving e-Physician. The clinical research system would function better if there were more doctors like him.

References
1. Pew Internet. Visit: www.pewinternet.org/commentary/2011/november/pew-internet-health.aspx
2. Blue Chip Patient Recruitment: Engaging E-Patients in Clinical Trials through Social Media
3. Google/OTX: Health consumer study – the role of digital in patients’ healthcare actions & decisions, December 2009
4. CISCRP: 2013 Perceptions & Insights Study
5. News Medical: Challenges in patient recruitment for clinical studies, 2009. Visit: www.news-medical.net/news/20091005/challenges-inpatient-recruitment-for-clinical-studies.aspx
6. EUPATI: Patient involvement in medicines R&D: The European Patient Academy on Therapeutic Innovation. Visit: www.eu-patient.eu/documents/events/2013-agm-10-anniversary/presentations/conference/1120%20the%20european%20patient%20academy%20on%20therapeutic%20innovation,%20nicola%20bedlington.pdf
7. IDC: Extracting value from chaos. Visit: uk.emc.com/collateral/analyst-reports/idc-extracting-value-from-chaos-ar.pdf
8. Eurobarometer Qualitative Study: Patient Involvement. Visit:ec.europa.eu/public_opinion/archives/quali/ql_5937_patient_en.pdf
9. Harrison Interactive study, 2004
10. Geissler, J, The e-Patient: empowered or overwhelmed? Visit:http://de.slideshare.net/jangeissler/the-epatient-empowered-oroverwhelmed-patients-perspective-on-new-technologies
11. Payne, J, The rise of the e-Patient, Scrip Clinical Research, October 2012


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About the author

Pete Chan is Chief Innovation Advocate at Tudor Reilly Health, a specialist in patient-centred experience and knowledge shared online. He is part of a team that uses advanced online tools to develop e-Patient InsightsTM to accelerate clinical trial recruitment. Pete was previously Analysis Editor at Scrip Intelligence.

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