Social media: from healthcare consumer to healthcare customer

David S. Williams, III

PatientsLikeMe

Patients want to discuss their health conditions with others who have had the same experiences. Why? Simply put, patients trust people like them.

Thanks to the Internet, patients can find other patients like themselves like never before. More and more people are going online to share their health stories and connect with people who can relate to their experiences. As a result, patients can find people who have the same diagnosis, take the same medication, and experience the same side effect. In fact, with more than 500 million English language Internet users worldwide, it’s now possible for patients to find people whose health situation almost exactly mirrors their own.

By many trust barometers, patients trust each others’ opinions more than they trust their doctors. Their peers provide support and advice based on personal experience. Their doctors provide guidance based on clinical experience. And in some cases, their doctors may only treat a handful of patients with the same condition. Think about that for a minute. Who would you trust?

Thus, in addition to using social media to connect with one another, patients are using it to share their complete health stories, including treatment experiences. “I believe getting knowledge from patients firsthand is the best way to learn how to cope,” says Randolph, a member of PatientsLikeMe who has bested the odds by living with Amyotrophic Lateral Sclerosis (ALS) for 24 years. “I have talked to people all over the world who have asked me how I have had ALS so long and what I do to keep going. I tell them my regimen and what seems to work for me.”

Patients say that one of the top benefits of sharing their health data and stories at PatientsLikeMe is the ability to compare. “I'd like other people to compare their symptoms and treatments with mine,” says Charlotte, who was diagnosed with fibromyalgia, a chronic pain disorder, a year ago. “This is still a very new area of medicine, and there is a lot being discovered and yet to be learned about it.”

The truth is that patients see their sharing as adding to the collective knowledge about a disease, not just anecdotal trading of stories. So do we. In fact, PatientsLikeMe recently used shared patient data from the site to compare the experience people with fibromyalgia have with two of the main medications indicated to treat it, Pfizer’s Lyrica and Lilly’s Cymbalta. Thousands of patients evaluated each medication and shared that information with each other.

"The truth is that patients see their sharing as adding to the collective knowledge about a disease, not just anecdotal trading of stories."

Here are two key insights from that analysis:

1. Many patients experience little efficacy from either treatment.

More than 40% of Lyrica patients and 50% of Cymbalta patients on PatientsLikeMe perceive slight to no efficacy, or they simply cannot tell. By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on the PatientsLikeMe site perceive major efficacy.

2. Patients taking Cymbalta experience fewer side effects than those on Lyrica.

26% of Cymbalta patients on PatientsLikeMe report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on PatientsLikeMe report severe side effects, versus 19% for Cymbalta. It is not surprising, then, that more Lyrica patients than Cymbalta patients report discontinuing the treatment and are doing so more quickly.

With this kind of patient-reported data available to them, patients are increasingly aware of how prescription medications affect their disease as well as their quality of life. They are learning from each other about the tradeoffs of taking certain drugs (i.e., associated side effects) and the choices they have based on efficacy and safety profiles. They’re also helping each other stay adherent to their medication regimens by quantifying the impact of discontinuation or “drug holidays.” In other words, patients are becoming more than just consumers of prescription drugs, they’re becoming knowledgeable customers.

This newfound customer empowerment is being felt in the doctor’s office as well. In 2010, PatientsLikeMe published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR). The study, conducted across several PatientsLikeMe disease communities, established a link between sharing health data and benefiting from using the site. In addition, the study found that 21% of fibromyalgia members strongly agreed or agreed that they had changed physicians as a result of using PatientsLikeMe, higher than the rate in MS (15%), depression and bipolar (10%), Parkinson’s (9%), HIV (8%) or ALS (6%) communities.

As patients become more educated, it is more important than ever to understand their needs and wants. Social media is the canvas on which patients paint the picture of their disease experience. To learn about the patient journey, including the reasons for drug adherence (or non-adherence) and what makes a strong doctor-patient relationship, the pharmaceutical industry must engage in social media. Failing to do so – by blaming regulatory restrictions or a fear of increased adverse events – will only cause the entire industry to further lose patients’ trust.

"To learn about the patient journey, including the reasons for drug adherence (or non-adherence) and what makes a strong doctor-patient relationship, the pharmaceutical industry must engage in social media"

Yes, there are companies that have dipped their organization’s toes into social media, but they’ve generally done it in very controlled environments (e.g., creating a corporate blog or Facebook page). These companies are using online environments more as a form of broadcast media, rather than a type of engagement media as social tools are truly intended.

Two pharmaceutical companies have recently shown great leadership in valuing patient experiences. Novartis and UCB have partnered with PatientsLikeMe to learn about the patient journey and integrate the patient voice into their business decision-making processes. This is a major leap forward in learning directly from patients in an appropriate, compliant manner.

Industry partners are able to engage with thousands of PatientsLikeMe members while remaining within regulatory bounds. One important reason is that adverse event (AE) reporting is a welcomed aspect of each partnership, as all AE information gets fed directly into the partner’s safety mechanisms for compliance. This achievement alone has removed much of the fear industry associates with social media interaction.

For pharmaceutical companies, remaining in the shadows of social media is no longer an option. The world is changing fast, and patients are becoming very sophisticated about their choices. It’s a competitive necessity to engage with patients or miss the opportunity to win in the emerging marketplace.

About the author:

David Williams is the Chief Marketing Officer and Head of Business Development for PatientsLikeMe

Do you see sufficient pharma-patient engagement?