Only 5% of patients ranked pharma companies as the most trusted player in the healthcare space, according to a 2021 survey of 500 patients from Accenture. When asked how pharma companies could earn more trust from patients, lower drug prices and other financially supported access to treatment ranked as the top things patients would want to see along with more educational resources and support of government policies to protect patients’ rights. But 71% also want publicly shared information about how patients’ perspectives were incorporated into the development of products and services.

Patients want to know other patients are involved in what pharma is doing. They want to hear about those patients’ experiences. Learn how pharma is involving them. Discover how products or services impacted them. Know they are getting information from someone they trust. That means pharma needs to do a better job of partnering with patient advocates, influencers, and ambassadors to get them involved, provide a peak behind the curtain, take in their feedback, and then let them tell their stories.

To help pharma to form better working relationships with patients, we asked patients who have experience working with the industry, pharma marketers who have partnered with patients, and agencies and other companies who specialize in patient engagement to tell us:

  • What do you look for in a partnership with a pharma company/patient? What are the most important factors for identifying the right partner? And what are the keys to a successful relationship?
  • What types of programs are you most interested in working on with a pharma company/patient? What are examples of successful programs you have done, and what made them successful? What kinds of programs are typically the most impactful?
  • What kinds of information are patients most willing to share from industry partners? And what regulatory considerations must industry partners adhere to when working with patients?
  • Has patient engagement evolved/changed due to the pandemic? Will those changes be lasting? Does pharma need to change anything about the way it currently engages or works with patients?

Noël Moossa

It’s imperative to be selective and informed when choosing a patient advocate, influencer, or ambassador. Brands must do their due diligence to ensure this person aligns to their core values, brings the right value to the table, and fits authentically with the brand. Once you choose a patient partner, transparency is tantamount to building a successful working relationship. Be clear in your governance documents and training to level set expectations. For example, everyone must be steeped in both FDA and FTC guidelines.

Then, the MRL team and the influencer must align on where there is flexibility within messaging while still abiding to brand safety guidelines, as you don’t want to lose the authenticity that the influencer brings. Their authenticity and credibility is their superpower—don’t diminish that by being overly prescriptive. Be open to collaboration and feedback from the influencer to create a seamless experience in a regulated industry. By fostering a collaborative environment, you are more likely to produce stellar content.

The Future of Patient Influencers

We are continuing to see a de-evolution of the brand voice and its power, as people seek to hear from others who represent them. As a result, micro-influencers representative of the diverse patient population are the future of pharma. People want to connect with smaller communities filled with people who look like them and share in their experiences. Pharma can harness the power of these influential voices to reach untapped audiences in previously inaccessible places, such as groups on Facebook or other social channels.

The pandemic sparked an increase in social media activity, as patients sought relief via online communities. This behavior won’t change as patients return to their new “normal.” Social media consumption remains high, making influencer programs more valuable than ever.

Sabrina Skiles

The most important factor for me when considering a partnership opportunity with a pharma company is knowing that our missions align. I don’t want to be “just another patient advocate” whom they choose at random. I want them to know who I am, the reason I am advocating for my health condition, and how we can work together because we have the same values. I want to feel like they did their homework before they reached out to me, understand what my pull is in my health community, and know they are listening to me.

When it comes to partnering on specific programs, the campaigns should use real patients and bring awareness to the health condition using our voice along with current research.

Successful and Unsuccessful Patient Campaigns

One example of a successful campaign that I have been a part of is HealthCentral’s “Tales from the Chemo Chair,” where I shared my story on what it was really like going through breast cancer as a young mom. I know it’s successful because of the numerous messages I receive on a daily basis from young women thanking me for sharing my story.

Unsuccessful campaigns are ones where a person is talking about a certain disease and there’s a little asterisk that says “*not a real patient.” It makes me roll my eyes and just think “get a real patient next time.”

Tara Balboni

For every program and initiative, the criteria of what we’re looking for in a potential influencer or ambassador are different: Age, gender, treatment status, patient or caregiver, disease progression, etc., vary. In many cases, we’re looking for people who specifically do not have a large social following in relation to their condition. It just all depends. In general, they must be interested and comfortable sharing their honest, personal perspective and working with industry. And if they’re willing to work with industry, they have to be okay with the review processes in place regarding their messaging.

The Best Kinds of Patient Programs

Well-executed, strategic patient engagement programs are always impactful—you just have to understand your goals. For example, social and web initiatives are excellent at bringing audiences into your ecosystem and building from there. Live patient outreach programs (LPOPs) on the other hand are great at driving action and building a local community. Call center services, especially mentor programs, are also extremely effective at driving action, plus they deliver invaluable market data that can guide strategy adjustments.

How the Pandemic Changed Patient Engagement

We’ve witnessed a pivot to virtual engagements due to COVID. Obviously, in many instances the shift happened because it had to, not because it was the optimal choice. While not all the changes are going to last, the industry has reached a new comfort level to explore all solutions, virtual or otherwise, which is certainly an improvement. Regardless of the tactics and strategies employed, I would encourage more biopharma professionals to get personally involved in patient engagement programs. Nothing contributes more to a good reputation than being approachable and vulnerable. A tangible human goes a long way to making everybody more comfortable.

Cynthia Chmielewski

When working with pharma, it’s important to know what the company is expecting to gain from the relationship. Will the selected advocates be working side by side with both the commercial team and R&D? Who will be at the table? Will the players change from time to time? Will they be in the position to help implement what is learned? Will the relationship be ongoing? Will the patient voice be valued? How much time will the relationship require? Will the advocates be reimbursed for their time and expertise? Will agendas, attendees, and pre-readings be provided ahead of scheduled meetings?

Personally, I am most interested in partnerships in two areas: research advocacy and co-creation of patient materials. Most of the relationships I have had with industry have been mutually beneficial. I feel my comments and suggestions have been heard, valued, and acted upon. I have reviewed and commented on trial protocols, informed consent forms, plain language summaries, and patient-facing materials. I also helped develop patient-reported outcomes (PROs) and initiatives to address patient unmet needs. When advocates and pharma trust each other and have a mutual respect for what the other brings to the table the relationship will be successful.

What Pharma Needs to Change About Patient Engagement

I believe the industry should require patient input in everything they do—the entire lifecycle of a drug’s development, educational materials, support portals, and website development. Patient engagement should be multi-faceted. Knowledgeable expert patients who have deep roots in the community can serve as ongoing advisors, but pharma should also be leveraging insights across the journey from newly diagnosed to those whose are considering hospice. Pharma should also be targeting diverse populations—those underrepresented in trials, younger patients, patients with young children, and frail and elderly patients. Different patients have unique needs.

Anthony Yanni

Typically, we think of patient partnerships in terms of their external impact—for example, to help educate doctors and payers. But I am a huge proponent of bringing patient advocates and patients themselves inside the walls of our own businesses in highly visible ways, to help change the culture of medicines development and delivery. When patient centricity goes from buzzword to organizing principle—from being a noun to being an adjective as I often say—then it becomes sustainable and begins to deliver its full promise.

A Patient-Centric Month Leads to Results

At Astellas, for example, June now is Patient Centricity Month each year. That’s been a powerful way to jump-start our cultural transformation. Almost every day in June, a live and/or virtual forum brings patient insights to employees, regardless of whether or not they work on the traditional front lines of R&D. Everyone at Astellas can hear from patients about the lived experience of particular health problems, the concerns of caregivers, the importance of treatment delivery, and the integration of new medicines into patients’ overall care plans and lifestyles. Employees are highly engaged with these opportunities and commit to new ways of patient-centered work as a result.

Of course: our goal is not just a transformation in June but continuously—and it’s happening. Recently, for example, we hosted a company-wide “Solve-a-Thon” to turn ideas into solutions for patient-centric development and delivery—and the results exceeded our highest expectations. Overall, I’m finding that the work of our Patient Centricity organization is becoming less about persuading and more about accommodating the desire of others to get on board. Patient partnerships make the difference.

Terry Matlen

It is important for me that any potential pharma partner is transparent in how it presents its information or resources to the public. I’d prefer the company’s goal be to educate and support individuals who will benefit from using their product and not simply advertise the product. I appreciate companies that are ethical, stable, financially transparent, and who have their potential customers’ best interests at stake. And I appreciate being able to work collaboratively, sharing ideas back and forth and being given specific guidelines, yet having some flexibility in listening to my thoughts and ideas.

For example, I used to work for Shire and part of that experience was being one of their “Experts on Call” with Ty Pennington in NYC. A group of us national ADHD experts answered phone calls from people all over the world who wanted to ask questions regarding ADHD. I have also written educational and personal articles for other pharma companies, provided social media posts, and done a lot of brainstorming for educational videos, blogs, etc.

Areas Where Pharma Could Do More

I believe having more support groups online, expert Q/A, and available ADHD coaches would be beneficial to adults with ADHD. Also, parents are a wreck! Offering them support, tips, strategies, and such would be most appreciated by the people I work with online. For example, offering body doubles to get things done and talking to professionals and advocates are things people I work with say they need but cannot afford.

I also wish I could offer a service where I could answer email questions. So many people reach out to me for information, resources, and advice, and I wish I could do more of that. I don’t see pharmas offering anything like that, but I believe it would be extremely popular.

Rishi Kadiwar

It’s no secret in 2022 that influencers act as trusted advisors helping patients and caregivers coordinate their healthcare journeys. Therefore, influencers are becoming a key component within pharma marketers’ marketing mix, especially when the likes of Meta are tightening their condition-based targeting capabilities. But, how do marketers find the right influencers? The types of influencers that can help marketers educate their audiences while being authentic and owning their narrative?

When looking for a potential brand advocate, I like to consider the following parameters:

Does the Person Have a Unique Point-of-View and Authority? The influencer must sincerely like and care about their niche and market. They must offer PoVs that are not cookie-cutter and often may go against conventional thinking.

Is the Person Authentic? As influencer marketing has become mainstream, there has been a proliferation of “career on-demand influencers.” These “on-demand influencers” do nothing to progress the brand message forward. Influencers must be authentic and own and live their narrative.

Is the Person Popular and Do They Have Reach? Authority may not be enough to make someone popular in certain niches. Arbitrary factors such as good looks, access to new data, exciting life experiences, or working from desirable locations may affect an influencer’s popularity.

Does the Person Fit the Brand? An influencer who’s a fit for your brand already has followers who are part of your target audience, and their values and goals align with your company.

Is the Person a Creative Storyteller? Can the influencer hold their audience’s attention through the use of different methods of engagement and exciting ways to tell your brand story—through social media content, podcast, in-person events, etc.?

Don Abramo

Our patient ambassadors are trusted partners. They are vital for brands within the rare disease space because they serve as the voice of the community. Their voices help us better understand how COVID impacts those living with hereditary angioedema (HAE). As the pandemic has waxed and waned, their insights have been so helpful that we will continue to work with them in their traditional role and in new ways.

When the pandemic first hit, face-to-face meetings were halted, making patients who already felt isolated feel even more isolated. Having built solid and trusting relationships with our patient ambassadors, we were able to work with them to understand how to maintain communication with and rally support for the patient community. Their insights were very important to help us navigate through uncharted waters by helping us identify new opportunities for marketing and how we could continue to support the patient community in light of the challenges everyone was facing. Ultimately, it helped us better understand how they were being impacted, which provided the necessary insights to create more relevant engagements and support to the community.

We refined and innovated our marketing efforts with ideas such as account takeovers and developing content to reach more patients in social media. With their help, we developed new ideas with some of our other promotional materials, which allowed us to keep engagement high within the community.

Nikki Cagle

Above all, we’re tuned into an advocate’s authenticity and passion. It’s not about the number of followers—it’s about the information they’re sharing and whether it speaks to their community, no matter how big or small. Questions that come to mind when we’re looking to work with an advocate are: Is their content helpful? Does it come across in a genuine and authentic way? Does it give followers a true behind-the-scenes look of what it’s like to live with a condition/disease? Equally important: Is it factually accurate?

Before tying our name to someone, we make sure their platform and message aligns with our mission and tone. Then we look to see if their passion is evident on their platform(s) at first glance. While they’re more than their condition, it does impact their life daily, and we look for that to shine through their regular posts. Our main factors for evaluating are authenticity, quality of content, and a consistent emphasis on life with a chronic disease.

The Keys to a Successful Partnership

A relationship goes both ways, the patient advocate needs to know that we’re just as invested in supporting and growing their reach and message as they are in helping us grow. Communicating what you’re hoping to gain from working together and how you can help them shows that you’re not just in it for the followers and clicks—you’re truly in it for the relationship and the betterment of the community. These patient advocates and influencers are real people living with real chronic conditions—they are not just a business venture. Getting to know who they really are and building a relationship of trust around that is the key to forming long-term commitments on both sides.

Ilana Massi

Health industry partners should demonstrate a strong commitment to patient awareness and education. The regulatory guidelines can be challenging but a pharma partner has numerous avenues to bring the patient voice to the business. Patient-centered programs, an existing patient advocate board or committee, and record of employee engagement by patient advocates are all critical to demonstrate that commitment. Because pharma employees do not engage with patients in their typical activities, keeping the “patient first” message requires all of the above. Advocacy presentations at employee meetings, including Q&A are central to achieving these goals.

In addition, Medical Affairs personnel are an important resource for healthcare providers and typically focus on the disease and data from the relevant clinical trials. They can be better prepared for questions that focus on the patient-centered issues. Using patient advocates to speak to Med Affairs or research employees on these issues helps to ensure that they can bring value to both provider and patient. These topics might include side effect management, patient compliance, and needs for other resources such as mental healthcare, general wellness, etc.

As a patient advocate, I have found that presentation of my personal experience is useful to both patients and pharma employees. I often prompt questions on these topics from the audience through a Q&A session, including some prepared questions such as long-term outlook, living with chronic disease, and seeking additional resources. For patients, I try to communicate that they are not alone and there is hope. When I speak with industry personnel, my focus is always to remind them who they really work for…the patient.

Sue Hrim

We engage with patient advocates and advocacy groups in two primary ways: 1) external outreach and education; and 2) internal training and development. For our campaigns, we use patient advocates to review concepts and copy for real-world interpretation. For content, they give us more personal language on daily challenges of the disease or treatment. Moreover, they help as much with tone as with content—striking the right feeling and attitude that you couldn’t capture by just reading the literature or talking with clinicians. In the tactical stage of our campaigns, we almost always offer our respondents links to advocacy groups that we know provide practical and trusted content. For our internal training, we use patient advocates to review our Clinical Education Specialists’ scripts, to develop FAQs, and to share their experiences with relevant treatments, procedures, or clinical trials.

The Pandemic’s Impact on Patient Engagement

During the pandemic, we saw a sharp increase in phone contacts from consumers who had questions “beyond the pill.” These included questions about appointment logistics, implications for current medications, and costs. So, we often consulted our patient advocates to educate our team on social and financial issues. We asked them about their experiences on things such as how they coordinated communication with multiple specialists, how they viewed the concept of randomization or placebo-control in clinical trials, and how they addressed insurance obstacles.

In the future, we envision continuing to teach patients to advocate for themselves by leveraging the experiences of patient groups. This means building on the simple tactic of patient-doctor discussion guides to better empower patients to be more than just “receivers” of clinical information or direction.

Olivier Chateau

The pandemic has dramatically increased the value of digital and social interactions among people living with complex health conditions. We’ve seen the role of patient leaders and online health communities increase in impact, value, and relevance because of an enhanced desire for people to feel connected with others through shared experiences.

In a similar manner, we’ve seen significant improvements in how patients can engage with their healthcare teams via telehealth, online portals, and text messaging services. These changes will endure and evolve because the technology that allows people to connect, either as a group or in one-on-one scenarios, will continue to improve. As patients realize the myriad opportunities available to connect with others about their health, the value and subsequent need will only increase.

Pharma’s Role Among Online Patient Conversations

The first step for the pharma industry is to recognize that these meaningful conversations among people living with complex health conditions are actively happening, and there are responsible ways to engage within that environment. In these environments, pharma can get an authentic view of what matters most to patients and use that learning to establish a relevant value proposition. In some cases, brands may see that patients are not only interested in managing symptoms or treatment effectiveness on a broad scale, but are also interested in therapeutic area research. Brands could also discover that text message updates and reminders or engaging on Instagram are valuable to them. Once that value is determined, patient leaders can then be leveraged to both reinforce and elevate that value.

What it always comes back to is that brands need to meet people where they are, and anticipate and address their needs.

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