When the Internet first became a public entity, communicators could only see the potential as another advertising or PR channel. For many, a website was simply and electronic version of the company brochure. A few individuals would publish content, and a small majority would digest this content. The audience demographic was not particularly balanced, as having access to the early Internet meant: Having the technologyKnowing how to use itHaving an interest in the latest thingThese are not necessarily characteristics of the mass population, particularly in the mid 1990s.
In the past decade, an exponential change has occurred in the ubiquity and usefulness of the Internet. Those three defining characteristics of an Internet user are no longer a factor.More importantly, ‘One-way’ publishedcommunication has become ‘Two-way’ conversationalcommunication and Web 2.0 is characterized by user generated content, networking, sharing, participation, collaboration, etc.Not only have the numbers increased, but the whole mode of operation has changed. The Internet is not a broadcast medium, it is a dynamic and lively place for information exchange.
That said, we find that the majority of patients/consumers spend more time looking for information than they are prepared to spend sharing it.
This is in keeping with a generalised model of participation, where most people are ‘audience’ with only key opinion leaders being actively engaged in creating content and interacting openly with others.
You have heard of ‘eMail’ and ‘eCommerce’; now we have a new term. Those that are actively engaged are sometimes referred to as ‘e-Patients.’ What does the ‘e’ refer to? It is about all kinds of active relationship words, such as ‘engaged’, ‘empowered’ and so on. Some call this the age of ‘Participatory Medicine’. The patient in some cases now wants to participate in the decisions about the management of their own health or treatment.In the same way that early adopters of the Internet were considered the ‘few’, so are the number of ‘e-Patients’. But this is rapidly changing as more and more people come online and see the benefits of taking control of their own health through access to information, resources, and people like themselves.
One community which has arisenfrom the possibilities afforded by social media and community, is a website for people to find other individuals with similar health issues. On one hand, PatientsLikeMe is a platform for people to record their own personal health journey; a life-log. But more importantly, it starts with the premise that with the Internet you can always find someone else in the world that is going through something like what you are.Particularly started for rarer diseases, this platform has spread globally.
A challenge for commercialised websites such as PatientsLikeMe, is how to generate income while maintaining the trust of the community. This is achieved through partnership with the pharmaceutical industry, to obtain data which may be useful in product development.But is this data ‘clinical’. Where does it sit in the evidence spectrum?
CureTogether is a platform for patients, by patients. Comprehensive surveys provide data which is aggregated. Lower Back Pain is 12th most popular condition community at CureTogether. 2,398 of contributed experiences with 21 symptoms and 46 different treatments that worked well and didn’t work so well.E-Patients access and make their own decisions based on these kinds of resources. What about misinformation? Who is ensuring that what ePatients find is helping and not harming them?
One thing is certain; Google is a significant influencer on what people see when they look for information about health.
Looking at an example of ‘high blood pressure’, Google is providing information which is in some ways customised to my personal online profile – but equally may include information from parts of the world which is not strictly appropriate for the regulatory territory in which I reside. It also does not differentiate between medical information, credible medical advice or support services, or experiential information.The Internet is ‘global’, yet our legal systems are designed to protect individual countries or regions. In reality, an e-Patient is not bound by these guidelines – only the companies within the territory are. If I were to search for treatments rather than conditions, I am exposed to marketing and promotional materials for products from other countries.
Eighty-eight percent of respondents noted that they turn to their physicians to validate online information, and the same number turn to other sources to validate information from their doctor. (n=5183, Global)
Although for a long time there has been research that indicates a common-sense notion, that people benefit when involved in their own health care – it is only now that the Internet and Social Media have evolved that it is truly possible for an ePatient to have the information and connections needed to be a participant.
Yet, even with our advances in technology – it is all still fundamentally about relationships between patients and those that can affect their health outcomes.
JnJ are an example of a company who has embraced the e-Patient population. More than 95% of videos are not product related, and conversation is allowed between users (and the company) to discuss health.
Very clear and plain English terms outline the mode of operation for the community. JnJ actively engage and steer conversation away from potential regulatory issues. Even so, the conversational tone is very personal and relational.
Recently, Facebook changed its platform so that it is no longer possible for a pharmaceutical company to disable conversations on company pages (unless specifically a page for a prescription product – in the US, obviously). For many, this meant removing their presence on Facebook – for others, it meant establishing a protocol in the absence of specific regulatory guidance from either the FDA or the PMCPA. This is difficult territory for pharmaceutical companies, as it is requires a paradigm shift in the way content is approved by legal and medical colleagues, and it requires the kind of ‘real-time’ response which is quite different from traditional communications.Whether it is easy or not, the empowered public – and particularly ePatients – EXPECT to be able to interact with a pharmaceutical company in exactly the same way as they would with Starbucks, Nike, Red Bull, Amazon, or any other brand which is an influence in their lives.
Janssen bravely established a real-time, post-moderation protocol which empowered communications colleagues to engage with the public – with medical and legal colleagues on alert via their mobile devices to action any content that they felt needed to be deleted or handled in a different way. Strictly speaking, this is not ideal, as non-compliant content may be on the Internet - if only for a brief time.Nonetheless, they have not been cited – and they are providing a valuable service to ePatients.
Once again, a simplified terms and conditions states the guidelines on comment moderation, enabling engagement.
Where can Pharma go with the changing landscape of ePatients and two-way interaction? There are large trends which provide opportunities for those companies that are willing to navigate sometimes uncharted waters. Here are some examples.
The e-Patient: Empowered, enabled and electronic Paul Grant Head of Strategy Implementation
Media Hospital Patient The Internet Specialist Doctor Pharmacist Insurer
Global internet access *Estimates Source:ITU World Telecommunication /ICT Indicators database
1996: “Web 1.0” 250,000 websites The Internet Published content User Generated Content (UGC) 45 million global users Source: Adapted from http://socialcomputingjournal.com
Collective intelligence > 80 million websites The Internet User Generated Content (UGC) Published content 2006: “Web 2.0” > 1 billion global users Source: Adapted from http://socialcomputingjournal.com
The Internet for health 2004 2008 36% increase 33% increase 27% increase 23% increase 18-34 years 35-44 45-54 55+ Source: “The State of eHealth: Trends of Today’s eHealth Consumer” Manhattan Research, 2008
Reasons for discussing health Find other people's experiences regarding treatment Find other people's experiences regarding an illness Share own experiences regarding an illness Share own experiences regarding treatments Other N=642; UK, France, Germany, Spain, Italy Source: IMR International (Australia) Pty Ltd “Social Media and Healthcare” (March 2010)
The 90-9-1 Principle Source: Ant’s Eye View & 90-9-1.com
The ‘e’ in e-Patient Equipped with the skills to manage their own condition Enabled to make choices about self-care and those choices are respected Empowered Engaged in their own care Equals in their partnerships with the various physicians involved in their care Emancipated Expert patients can improve their self-rated health status, cope better with fatigue and other generic features of chronic disease such as role limitation, and reduce disability and their dependence on hospital care Source: E-Patient, //en.wikipedia.org/w/index.php?title=E-Patient&oldid=437847665 (last visited Oct. 4, 2011).
Impact of health searches 4 in 5 Internet users search online for health information. Of these so-called ‘e-Patients’; 1 in 3 consumers compared doctorsbefore choosing one 6 in 10 say the information found online affected a decision about how to treat an illness or condition 1 in 2: it led them to ask a doctor new questions, or to get a second opinion from another doctor 1 in 2: it changed the way they think about diet, exercise, or stress management 1 in 3: it affected a decision about whether to see a doctor 1 in 3 consumers compared prescription treatment options Source: Susannah Fox, Sydney Jones “The Social Life of Health Information” Pew Internet, June 2009
Discussed online info at appointment Used Internet instead of doctor Said online info influences health decisions Asked doctor to prescribe Rx/change Txbecause of online info Challenged physician's diagnosis b/c of online info Actions taken by e-Patients 50 m Source: Manhattan Research, Cybercitizen Health® Europe v10.0 (2010) > 76m European e-Patients
The new “Second Opinion” Source: Health Influence in the Era of Public Engagement. Edelman, (January 2009)
Participatory role in outcomes It is also largely accepted that when patients play a role in their care, there are benefits: Improved experience and thus better overall outcomes (Stewart et al., The Impact of Patient-Centred Care on Outcomes, Journal of Family Practice, September 2000, Vol. 49, No. 9) Improved adherence (Robinson et al., Patient-centered care and adherence: definitions and applications to improve outcomes, J Am Acad Nurse Pract. 2008 Dec;20(12):600-7)
People >> technology “...patients are arguably the greatest untapped resource…” Source: Corrigan P, DIY doctors: patients can boost NHS’s value, Health Service Journal 30 April 2009, pp12–13
Doctors seek online information Professional info sources used among physicians Double digit % growth since 2007 Source: Manhattan Research, Taking the Pulse® Europe v10.0 (2010) Source: Manhattan Research, Taking the Pulse® Europe v10.0 (2010)
Changing channels for HCPs Print and Online Journals Colleagues New Technologies Pharma Reps Social Media Pharma Sources Smartphones and other mobile devices Online networks Source: Meredith Ressi, President, Manhattan Research
Two-way impact on health Nearly half of EU Physicians recommend websites to patients; Source: “Cybercitizen Health Europe” Manhattan Research, 2009
Real-time Information, Tools, Data 2020 2011 2000 Static Content Participatory Medicine Physician-directed Medicine A rapidly changing landscape Source: Meredith Ressi, President, Manhattan Research
Pharma Pharma Media Hospital Patient The Internet Pharma Specialist Doctor Pharmacist Pharma Pharma Insurer
Opportunities for Pharma Empower consumers to shift from online health information seeking to online health management and participation Creating tools to bridge the ‘digital divide’ between patients and providers Beyond social media: ‘Engaging’ with customers A holistic view of healthcare delivery Service as marketing Source: Meredith Ressi, President, Manhattan Research
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