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The e-Patient: Empowered, enabled and electronic


A presentation to Medical Information colleagues at the DIA Clinical Forum in Basel, 10th October 2011

A presentation to Medical Information colleagues at the DIA Clinical Forum in Basel, 10th October 2011

Published in Health & Medicine , Business
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  • Really inspiring presentation given at the DIA Medical Information & Communications track conference in Europe October 2011. As Medical Information people working in pharma engage with patients every day, it's critical to be aware of the trends; where patients get their information from, how they interact with doctors and other HCPs and what they are looking for in engagement.
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  • 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.


  • 1. The e-Patient: Empowered, enabled and electronic
    Paul Grant
    Head of Strategy Implementation
  • 2. Media
    The Internet
  • 3. Global internet access
    Source:ITU World Telecommunication /ICT Indicators database
  • 4. 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
  • 5. 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
  • 6. The Internet for health
    2004 2008
    36% increase
    33% increase
    27% increase
    23% increase
    18-34 years
    Source: “The State of eHealth: Trends of Today’s eHealth Consumer” Manhattan Research, 2008
  • 7. 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
    N=642; UK, France, Germany, Spain, Italy Source: IMR International (Australia) Pty Ltd “Social Media and Healthcare” (March 2010)
  • 8. The 90-9-1 Principle
    Source: Ant’s Eye View & 90-9-1.com
  • 9. 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
    Engaged in their own care
    Equals in their partnerships with the various physicians involved in their care
    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).
  • 10. Sharing can be very personal
  • 11.
  • 12. Can UGC = clinical data?
  • 13.
  • 14. Health
  • 15.
  • 16. 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
  • 17. 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
  • 18. The new “Second Opinion”
    Source: Health Influence in the Era of Public Engagement. Edelman, (January 2009)
  • 19. 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)
  • 20. 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
  • 21. 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)
  • 22. Changing channels for HCPs
    Print and Online Journals
    New Technologies
    Pharma Reps
    Social Media
    Pharma Sources
    Smartphones and other mobile devices
    Online networks
    Source: Meredith Ressi, President, Manhattan Research
  • 23. Two-way impact on health
    Nearly half of EU Physicians recommend websites to patients;
    Source: “Cybercitizen Health Europe” Manhattan Research, 2009
  • 24. Real-time Information, Tools, Data
    Static Content
    Participatory Medicine
    A rapidly changing landscape
    Source: Meredith Ressi, President, Manhattan Research
  • 25. Pharma
    The Internet
  • 26.
  • 27. The content available from the Johnson & Johnson health channel is for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Reliance on any information provided herein is solely at your own risk. Some producers have received nominal compensation for use of their videos on this channel. Their views and opinions are their own, and not those of the Johnson & Johnson Family of Companies. Dr. Nancy Snyderman was formerly employed by Johnson & Johnson Services, Inc.Comments are subject to approval. Comments which are off-topic, offensive, or promotional, will not be posted.Neither Johnson & Johnson nor any of its operating companies (Johnson & Johnson) are responsible for third-party materials appearing on the Johnson & Johnson health channel, including but not limited to linked third-party videos, linked third-party sites, and third-party advertisements. J&J does not control or endorse this third-party content and makes no representations regarding its accuracy. ©Johnson & Johnson Services, Inc. 2008-2011
  • 28.
  • 29.
  • 30.
  • 31. 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
  • 32. Get the strategic edge!
    Subscribe for the e-Journal for business leaders and communicators in healthcare:www.engagementstrategy.com