The e-Patient: Empowered, enabled and electronic

Editor's Notes

1. 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.
2. 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.
3. That said, we find that the majority of patients/consumers spend more time looking for information than they are prepared to spend sharing it.
4. 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.
5. 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.
6. 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.
7. 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?
8. 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?
9. One thing is certain; Google is a significant influencer on what people see when they look for information about health.
10. 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.
11. 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)
12. 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.
13. Yet, even with our advances in technology – it is all still fundamentally about relationships between patients and those that can affect their health outcomes.
14. 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.
15. 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.
16. 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.
17. 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.
18. Once again, a simplified terms and conditions states the guidelines on comment moderation, enabling engagement.
19. 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.