Learning a Lesson From Patient Advocates


Analytics by on May 25th, 2013

In his book, What Would Google Do?, Jeff Jarvis tells the story of how a publishing titan asked Mark Zuckerberg how he could create a social community as successful as Facebook. Zuckerberg explained, “You don’t start communities…Communities already exist. They’re already doing what they want to do. The question you should ask is how you can help them do that better.”

Two-way communication. Engagement. Open dialogue. Those are the types of interactions that patients wish pharma companies could do better, especially online where patients are on Twitter, writing blog posts and participating in disease-specific communities. Patients don’t want companies to talk to them, they want to talk with them. Funny enough, those were the same goals I had for this Trend Talk section when I started it a little over a year ago. I wanted to create an avenue for readers to send us their thoughts on the hottest topics affecting the industry. To take the pulse of the industry—and beyond if the question called for it—and offer a variety of opinions, advice and insight that our readers could use. But it turns out that just as pharma is falling short with its communication with patients, I fell short in my ability to communicate that issue to you.

As George Bernard Shaw said, “The single biggest problem with communication is the illusion that it has taken place.”

Well, I must have been a little delusional when I posed last month’s question about patients as brand advocates, because what I meant could not necessarily be understood based on what I said. For those of you that don’t remember, allow me to, hesitantly (because I now cringe a little when I read it), repeat the question here:

Social media has created a web of readily available brand advocates. For the most part, these are just regular people who are talking about the stuff they like and in doing so are influencing their social circle to also purchase that product. Now, new companies are emerging that are attempting to measure a person’s influence on social media. These companies, such as Klout and PeerIndex, do not only analyze a person’s influence and give them a score, but they work with brands to help them promote their products. For instance, high influencers can be given a discount on a new product or just given a sample to try out. Then it is up to them if they want to tweet or post about it—obviously the brand hopes they like it enough to recommend it. While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar? What is the best way that pharma marketers can work with patients to improve their campaigns? What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there?

As the Captain told Cool Hand Luke, “What we’ve got here is failure to communicate.” I became aware of my failure thanks to one of the patient advocates that I emailed who wrote a terrific blog post regarding the question. The blogger, Regina Holliday, is an activist, artist and author in Washington D.C., who frequently speaks about patient access to healthcare data, social media in medicine, end of life care and the power of the visual image.

I encourage you to read the whole post, because frankly I couldn’t agree more. In no way did I mean to suggest that pharma should take advantage of patients or attempt to exploit them in any way, and I apologize to anyone who may have arrived at that conclusion. The point I was trying to make was that pharma needs a different model for engaging online with patients than what consumer packaged goods companies are doing. Pharma companies need to find a way to learn more about the people their products are treating and social media is a great place to do that.

Brenda Snow, Founder and CEO of The Snow Companies, an agency that uses real-life patient stories in direct-to-patient initiatives, says that they often hear from patient opinion leaders (POLs) that they want to work with pharma to make the patient experience better. They don’t see a conflict in it, as long as the relationship benefits patients and not just the drug companies.

“There has to be transparency, integrity and authenticity in how POLs work with pharma, online or not,” says Snow. “Anything else would be harmful and counterproductive for everybody involved.”

Of course, one of the main reasons pharma is so reluctant to dive head first into direct online engagement with patients is the regulatory concerns due to unclear guidance from the FDA when it comes to social media.

“Pharmaceutical companies like certainty,” explains Kristie C. Kuhl, JD, Executive Vice President at Makovsky, a public relations firm in NYC. “They want to make sure that they are following the rules and the FDA has provided anything but certainty. Frankly, the FDA draft guidance they have provided so far [on off-label communication] is full of so many contradictions it sort of reflects a lack of understanding of how social media works, and that just muddies the water for pharmaceutical companies.”

Kuhl further explains that it can be confusing for pharma companies to figure out what’s legal to say in the social space and what they are allowed to do. The only current draft guidance that mentions social media is focused solely on off-label communications and even that leaves pharma companies scratching their heads at times. For instance, the draft guidance states that pharma should handle any questions about the use of a brand-named drug through an offline channel. However, what if a patient takes that response and blogs about it or puts it out on Twitter. Does that then mean the company is going to be deemed as engaging in off-label promotion when it was simply answering questions about new data that could be out about a product? The fact that pharma can’t answer that question with certainty, as well as countless similar questions, is the reason many in the industry are hesitant to engage in the space. That doesn’t mean they wouldn’t love to.

“Unfortunately, there’s not that much back and forth right now [between patients and pharma companies in social media],” says Kip Cross, Manager of Patient Advocacy at Millennium Pharmaceuticals. “We would like to have more, but right now it’s mostly trying to figure out what regulations allow.”

Millennium does have a Twitter account, a Facebook page and a YouTube page. But rather than use these channels to have conversations with patients, they instead try to use each channel to keep people informed and show their support to various patient groups. For instance, on Twitter they could tweet confirmation of a time and place of a conference where they will be presenting new information, while on YouTube they can show their support for the Stupid Cancer road trip. Stupid Cancer is a non-profit advocacy group that empowers young adults affected by cancer with initiatives such as a 12-day, 13-city cross country road trip to raise awareness about cancer.

But, the bottom-line is that actual engagement with patients on social media is not something many pharma companies feel comfortable with in this current regulatory environment. And finally, that brings me back to my questions. In lieu of these circumstances, I wanted to find out how pharma could use the social conversations happening online to learn more about patients, how pharma could improve overall communications with patients, and how pharma could help patients increase their reach and overall experience online. As Zuckerberg told the publisher, these communities already exist; pharma just needs to find ways where it get involved without crossing the regulatory line.

Telling the Patient’s Story

“The voice of the patient is becoming more and more prominent in the way healthcare is delivered, thanks in part to technology and social media,” says David S. Duplay, Founder and Chairman of Healtheo360, a social caring network where patients with chronic conditions can find support, encouragement and information. “By sharing stories of personal journeys through social media, patients both give and receive Virtual Social Therapy, peer counseling, motivation and support. Pharmaceutical manufactures, managed care organizations and all stakeholders in the continuum of health need to pay attention to the growing voice of the patient and caregiver.”

Pharma companies are recognizing the power of the patient’s voice and they are finding ways to help patients spread their message to a wider or different audience.

For instance, Millennium Pharmaceuticals created MyMultipleMyeloma.com, a comprehensive resource for myeloma patients where they can learn more about the disease, access information that would help them along their journey (such as financial assistance and emotional support), find portals to online communities and support groups and offer a place where they can share their story. The website includes profiles on several patients and caregivers as well as videos that could help other patients deal with myeloma.

“MyMultipleMyeloma.com really provided us an opportunity to get out there and express what Millennium believes is its patient-centric capabilities and be able to bring patients together and really provide an outlet for those patients to learn new things about multiple myeloma rather than duplicating what advocacy groups were already doing,” explains Cross.

Millennium also does Local Patient Outreach Programs (LPOPs), which are live programs where key opinions leaders as well as MyMultipleMyeloma patient ambassadors speak to patients. These programs are completely unbranded and offer an opportunity to provide patients with another source of information and maybe a fresh perspective as they can hear from doctors from a different area. Meanwhile, the patient ambassadors can offer hope and inspiration as they discuss what they’ve been through, offer empathy to the patients at the event and let them know there is a light at the end of the tunnel, according to Cross.

Cross says that the company finds many of its ambassadors through other patient support groups. Most of the time, these people are patients who were already telling their story but wanted to make a difference in other patients’ lives. Millennium then helps to build them up and train them in order to better express their story.

According to Brian Loew, Co-founder and CEO of Inspire, a network of wellness and health communities, other pharma companies are following this same example of recruiting patient leaders from online communities.

“At Inspire, patients frequently discuss their treatments in great detail,” says Loew. “Some of the most active patients in our communities, particularly those in cancer support groups, emerge as natural leaders—they become ‘patient KOLs.’ Several of our pharma clients have asked us to introduce them to these patients, with the goal of identifying those patients who are naturally inclined to share their stories.”

Pharma can also share what they know or learn about patients in order to help these “patient KOLs” or POLs gain a further understanding of others in a similar situation thanks to varying perspectives. This is an area where insights gleaned from social listening can be helpful. Treato is analytics company that combines Big Data technology with patented Natural Language Processing algorithms to tap into patients’ opinions on a wide scale.

Ido Hadari, CEO of Treato, says that the use of social media listening tools can really support pharma marketers in identifying and engaging patient advocates. “And once engaged, share with these advocates the wisdom of the crowd—the collective understanding and insights of the voice of the patient—to build confidence, loyalty and new patient-generated content.”

Improving Communications to Patients

Who is better to ask about what patients want from pharma than the patients themselves?

“Listening is the first step for a social media strategy and part of that listening is identifying your patient influencer leaders (POLs),” says Jim Lefevere, Director, Global Digital Marketing at Roche. “Roche Diabetes Care pioneered Social Media Summits for the diabetes online community that brings together patient opinion leaders to discuss issues and identify ways to work more effectively together. Our goals are to build relationships with POLs and understand patient needs.”

The insights gained through social listening and these summits can be beneficial for research, competitive reviews and developing strategies such as content marketing that will resonate with your audience, explains Lefevere. In addition to Treato, other companies in this space include ListenLogic Health, NextPrinciples.com, Traackr as well as many others.

Meanwhile, in the orphan drug space, patients and caregivers play a key role in advocating for therapies prior to launch. According to Wendy White, Founder & President of Siren Interactive, a healthcare agency specializing in relationship marketing for rare disorder therapies, it only makes sense that these POLs will continue to influence others regarding starting and adhering to therapy. Siren Interactive has helped pharma companies identify and interact with these POLs.

“One way is to invite POLs to join a patient advisory board where they are given the opportunity to provide advice to the brand,” explains White. “During quarterly meetings (whether virtual or in person) patients can tell brand managers what the community needs and provide feedback as projects develop. POLs can offer input on language, images and how biotechnology and pharmaceutical companies can bring value to the community.”

However, it is important to ensure that patient advisory boards are done with transparency and thoughtfulness, according to White. But in the end, projects and tools that that are co-created with patients are more likely to be embraced and shared via social media by the community.

Bob Muha, Vice President of Commercial Strategy at Roska Healthcare Advertising also suggests that brands engage POLs as early as possible in the development stage.

“Include them in clinical trials and other research,” suggests Muha. “Encourage them to be open about their experience and their relationship with your brand to help build credibility early, and tap into their knowledge, their passion and their existing networks of followers to help ensure your promotional strategies, tactics and messages will truly resonate.”

Another piece of advice from Muha: Partner patients with their doctors in a collaborative effort to identify how the campaign can enhance the dialogue between patients and physicians, which could result in better adherence with the medication.

Pharma marketers could also benefit from offering patients more value.

“As part of your campaigns, determine who the influencers are, craft special offers for them, and allow them to share these offers with others they think will benefit,” suggests Leerom Segal, President & CEO of Klick Health. “The offers will vary depending on your condition, audience and treatment type. The offers should be unique, rare, limited in quantity, provide something special and valuable to the audience. Then close the loop, thank the sharer, and provide them with even more ways to help others. The drive for patients to help one another can be a strong motivator, but only if your brand is supplying true value. Be sure to test your offers to confirm the value to the patient.”

Partnering with Patient Bloggers

As part of one of the company’s programs, Animas Corporation, a provider of Insulin pumps, sponsors a diabetes blogger and supplied her with a new insulin pump gratis. Kerri Sparling’s blog can be found at www.sixuntilme.com. Sparling, however, is still not a brand advocate. She merely shares her experiences and does not endorse any specific product. Let me let her explain it to you:

“I’ve had type 1 diabetes for 26 years, and have been an active diabetes writer at www.sixuntilme.com for eight years. For the last three years, I’ve been sponsored by Animas Corporation, the people who make my insulin pump. They are looking to involve a trusted member of the diabetes community and, in turn, I provide real, honest feedback and perspectives about life with their product both by way of editorially-vetted posts for their corporate site and my unedited perspectives on my personal blog. It’s up to me to disclose my relationship with the company (here’s my formal disclosure page) and I am careful to do that. They take a risk by opening themselves up to whatever I may write/say about how their product fits into my life, and I take a risk by potentially seeming as though my perspectives are ‘purchased.’

The truth is, I write how I feel, and how their pump makes me feel. If they are uncomfortable with how I present my experiences with their insulin pump, I’m sure they’ll end the contract. And if I feel they are unfairly influencing my content or perspectives, I’ll end the contract. But at the end of the day, I still have type 1 diabetes. No matter who sponsors what, I’m still not cured of this chronic illness. The influence of the patient communities and the real ‘patient voice’ trumps so many other outreach efforts, because who knows your disease better than those who also live with, and care for, it?”

Data Mining Social Insights

In addition to individual bloggers such as Sparling or Holliday, there are millions of patients engaging in online communities. RareConnect.org provides a whole list of communities for various rare diseases, the American Cancer Society has several cancer communities listed on their website, and Diabetic Connect is just one of the many diabetes communities available. And even more conversations are happening online beyond that through tweets, forums, Facebook and more.

“Online and social media is the world’s largest unaided focus group,” explains Mark Langsfeld, Co-Founder and Chief Strategy Officer of ListenLogic Health. “What’s unique is that questions aren’t asked, rather patients, caregivers and HCPs are simply sharing their opinions, attitudes and behaviors in a natural setting. Think of it as digital ethnography. When most people think of ethnographers, they picture a researcher video recording a patient in a household one-on-one setting. Digital ethnography is as if the patient was filming himself or herself and broadcasting to the world. So the impact of one post can immediately reach millions in that specific therapeutic area.”

ListenLogic Health is an analytics company that collects these conversations happening all across the web to provide pharma companies with insights about patients and caregivers. According to Langsfeld, the company identifies the top influencers in each therapeutic area using five criteria: activity of the individual (how often they post), reach (based on site traffic, followers, friends, etc.), quality of posting, experience with the condition, and their overall impact (based on the community’s reaction to their posts). Once they have identified the top influencer in each category they provide the list to pharma companies along with a detailed portrait for each top influencer.

“In the last year, we’ve seen an absolute 180-degree change as far as pharma’s interest in reaching out to these new online influencers—particularly those who are open to new treatment options—and not just going after media-type influencers,” says Langsfeld. “Pharma really wants to operate at the 10,000-foot level rather than the 30,000-foot level where they’re engaging patients and very influential caregivers in specific therapeutic area online communities.”

Typically, pharma companies will reach out to these bloggers, or have the brand’s agency do it on their behalf, and provide further information on a particular treatment path and its benefits, much the same way they do with their key opinion leader outreach, according to Langsfeld. The purpose of this is not about brand advocacy but rather brand awareness.

“In social media you have to be genuine,” explains Langsfeld. “These companies want to strategically reach out to these new key online opinion leaders to create a grassroots push to increase brand awareness to their particular treatment. They are very tactical about it. They really try to educate, because these bloggers, influencers, forum engagers love to educate their audience.”

While pharma companies are reluctant to directly comment in these communities themselves, this provides one way that they can interact with patients offline and provide them with information and answer their questions. Then it is up to the patient whether he or she wants to take that information back to their online community.

Working with Nonprofits

While engaging with patients online would be nice, there is nothing (regulatory) preventing pharma companies from interacting with patients in person.

The Leukemia & Lymphoma Society (LLS) is a 1. 501c3 nonprofit health organization dedicated to funding blood cancer research and providing education and patient services. The organization also has a very strong and robust partnership with the pharmaceutical industry. The key to the strong partnership has been transparency and a clear line of delineation. Carson Jacobi, Vice President of Corporate Giving at LLS, says that industry partners understand that LLS has full control over content or anything that the organization does.

“Our belief is that everyone needs to be at the table in regards to driving therapies and moving therapies forward, and also access to therapies for patients,” says Jacobi. “Not only patient advocacy groups but doctors and hospitals and the FDA, the government and pharmaceuticals all need to be at the table and have partnership and dialogue about we can all work together to move that needle ahead.”

The lines between LLS and their pharma partners are always open. When a pharma company has a new treatment option in the blood cancer space, they may reach out to LLS to see how or if they could work together. Jacobi says that there are also times when she may reach out to industry partners if she becomes aware of new treatment options in their space or if LLS has something newsworthy to share themselves.

LLS also has a unique structure. While the nonprofit has a national office in White Plains, NY, the organization also has local chapters all throughout the United States and Canada. Pharma companies are often interested in the various ways that they can interface with these local chapters and connect with patients. One way they can do that is as a sponsor of one of LLS’ fundraising campaigns. For instance, LLS holds their Light the Night Walk across the country sometime during the autumn months. These walk-a-thons take place in the early evenings and everyone carries an illuminated balloon as they walk to raise money to fund new treatments. Some pharma companies form teams with the local chapters and walk alongside thousands of patients and their families and caregivers to show their support. The pharma companies that are national sponsors can also have a table setup so that they can share information with patients and answer their questions.

According to Jacobi, LLS can also help pharma companies make a more personal connection with a patient. Occasionally, a pharma company will reach out to the organization to see if they can identify a patient who would be willing to speak with the company. LLS then follows a process to make sure that the patient is indeed interested before giving his or her name to a pharma company. The reason pharma reaches out to speak to an individual patient: “It’s predominantly to get a better understanding of the patient experience,” says Jacobi.

Online Social Engagement with Patients

However, patients still what pharma to engage with them online. Make them a part of the healthcare conversations. Treat them like people and not a number, subject or potential consumer.

Erin Byrne, Chief Engagement Officer at ghg, believes that best way pharma can improve its relationship with patients is by contributing to patient communities. Companies should provide content and experiences that are relevant, meaningful and valuable to the community as well as highly sharable. That way, patients can easily pass it along to others in their network who could also benefit from it, Byrne suggests. However, there is still that looming threat of FDA backlash if pharma says the wrong thing.

“Every company has a different appetite for risk, and so they’re all looking at things differently and the ways they’re interpreting things is different,” says Kuhl.

That is why some companies have participated in some sort of engagement. In her blog, Holliday mentioned Lilly Clinical Open Innovation or @Lilly_COI on Twitter. “They talk with us. They attend our tweetchats. They even wished me Happy Birthday through a retweet last week.”

Sanofi is known for many of its social media initiatives. For instance, the Sanofi US Diabetes Facebook Page or their new “Celebrate Someone” app, which allows severe allergy suffers to thank someone who has helped them. For the first award that someone makes, Sanofi will donate $5 to a patient advocacy group focused on severe allegories.

“Social media has created tremendous opportunities for Sanofi to better engage with our patients,” explains Anne Whitaker, President, North America Pharmaceuticals at Sanofi. “We can be part of the discussion by joining the online community and going to where the conversations are happening. Social media can empower patients to take control of their health and spark conversations that provide insights into how to better meet their needs. We can help patients throughout their journey. Management of one’s disease takes place outside the few hours they spend at the doctor’s office each year. By joining in the conversation we have become a trusted partner through our online dialogue.”

Muha offers another example: Novo Nordisk’s “Where Have you Flexed” contest for people who used the company’s FlexPen insulin delivery system to manage their diabetes.

“The campaign featured patients who submitted photos of themselves using their FlexPen at different locations and doing all kinds of activities,” says Muha. “It really promoted the independence that FlexPen provided to people with diabetes, and inspired and motivated people not aware of this alternative for insulin delivery to talk to their doctors.”

Pharma has at least dipped its toe in social but as many marketers could tell you, pharma is unlikely to take that next step to true engagement until the regulatory environment is clearly defined. The FDA has promised guidelines for social media by July 2014, so we may have to wait until then to see if pharma will ever engage in open dialogue online.

“These companies certainly recognize that people with various diseases, especially people who are taking chronic medications, they’re talking to each other and they’re talking online and they do want information,” says Kuhl. “So if we do get that guidance in July, which I hope we do, and pharma has some guide posts I think they’ll become much more engaged.”

Until then we may have to settle for what many still consider to be the mere illusion of communication.

2 Responses to “Learning a Lesson From Patient Advocates”

  1. March 30, 2015 at 1:51 pm, Carole Levis said:

    As a 28 yr survivor of Multiple Myeloma it is very gratifying to have all the resources available today. When I was diagnosed I had very few options. Now as

    Reply

  2. March 30, 2015 at 1:57 pm, Carole Levis said:

    As an Ambassador it allows me as a 28 yr survivor to give hope to others by telling my story. To be able to engage with others on this journey is a blessing.

    Reply

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