Building an Effective Patient Network

How patient-centric healthcare companies can create compliant patient network solutions.



We are in an era where healthcare companies, including pharma, are attempting to put patients at the heart of everything they do. This approach is far removed from the traditional sales-driven approach of the pharma industry, and therefore many companies are seeking outside input to facilitate culture change. Health Advocacy Strategies (HAS) is one such provider of outside input, helping create compliant solutions for their clients. HAS is a specialized health communications firm that assists biotech and pharma companies to incorporate the authentic voices of real patients in all aspects of their business. Its mission is to change the way that people engage in their health by sharing personal experiences and connecting with others who have a similar background.

Jean McCoy, Senior Vice President of Strategy and Innovations for HAS, spends most of her time working with existing and potential clients to uncover what their current modus operandi is, and helping them increase their vision of where patients can fit into day-to-day operations. She explains, “When you’re engaging with patients, the most important thing to remember is that you’re building a relationship, similar to any other relationship in your life. You need to listen to what they need, internalize the information, and then act on what you’ve learned.”

Engaging with patients throughout the product lifecycle

Generally, pharma companies would like to engage with health consumers from early stage development and throughout the product lifecycle. From early stage development, McCoy advocates that companies consider using a patient advisory board - a group of patients with diverse backgrounds and different approaches who are brought together to learn what a company is thinking of doing. The group then gives its opinions and companies can adjust their thinking based on the needs of the patient population they’re trying to help.

They should actually ask them and understand the nuances of what they need at different stages of their disease.

Patient advisory boards can be used throughout the product lifecycle, with companies asking questions and keeping an open mind during the entire process. “Companies that are doing the best jobs are those that are not just assuming that because a patient has a condition they need a specific drug; they should actually ask them and understand the nuances of what they need at different stages of their disease,” says McCoy. In short, businesses may need to create different solutions throughout the patient journey.

McCoy provided an example of how an advisory board had assisted a company that had produced a new formulation requiring refrigeration. Initially, the organization left patients to come up with their own solutions, such as using lunch-boxes or thermos containers to keep the product cool. A group of patients was later brought together to design better packaging because, as McCoy points out, “If you have to be on the go in life, having a refrigerated product is not always easy.” 

Building a successful patient-centric program

McCoy believes the foundation of all patient-centric programs is a patient network. Her belief stems from the fact that a patient network provides a platform that protects both private health as well as personally identifiable information in a compliant manner. It also allows a client to gather all the information needed. These networks can be personalized and broken down into sub-groups, which makes it easier for companies to talk to individuals and to tailor the message to be meaningful.

She cautions that healthcare companies need to select experienced partners with a good understanding of patient centricity to build their patient networks. Indeed, she recalls a client company that used its advertising agency to recruit patients and then wanted them to join the patient network. When HAS worked with these patients, they found many didn’t even have the specified disease. The advertising agency had offered money for people to tell their story, which led to many people taking a chance. “We’re working in a highly legally and regulatory monitored environment; for companies and patients it’s important to understand what’s going to be allowed,” says McCoy. “We want people to be creative, but they must know their regulatory restraints.”

Health Advocacy Strategies also assists its clients to employ user-generated videos. The company now offers a video ‘app’ that they have licensed and incorporated into their compliant program offering. Once the video is uploaded, the patient no longer has access to it, and it becomes part of the company database. This new technology facilitates the collection of large volumes of content. The videos can be edited to ensure that the messaging is compliant with what the company is allowed to say, and the content can be used for a variety of purposes internally or externally. It’s a rapid and cost-effective way to obtain a vast amount of patient information, and most patients are happy to tell their stories to help others.

In response to requests from many of their client companies, HAS also put together three webinars on patient centricity. It took months to collate all their research and to evaluate what had worked in various projects - as well as what hadn’t. The key learnings cover seminars on early stage development; the pre-launch; and the post-launch, continuing into the lifecycle of the product. As these webinars have been so well received, an eBook is being compiled and will be published in 2016.

Four steps to embedding patient-centricity

Health Advocacy Services has been operating programs across a wide range of organizations since 2002. McCoy is aware, from her 20 plus years in pharma, that, “It’s possible to start thinking inside the same box, and consultants can bring a broader perspective to the table.” While the confidentiality of clients is always protected, she feels that knowing how other companies have approached certain situations can provide an alternative viewpoint of how a problem might be handled.

The HAS program comprises four steps to assist pharma companies to embed their patient-centric process.  The steps involve building, recruiting, evaluating and engaging:

  • Building - The first step of building a network is based on a template of policies and procedures that the advocacy service has compiled over the years. The client company can adjust this template based on its internal policies, so that they are always working within their own rules.
  • Recruiting - The recruitment process takes place through a variety of relevant channels and HAS pays special attention to finding the right patients according to the brand they’re representing and the medical condition involved.
  • Evaluating - A careful process of evaluation takes place post-recruitment to ensure they have the right diversity of patients with the necessary skill sets. “Just having a specific disease may not be enough to be included in the network,” explains McCoy. “It is important to ensure that the patients are good public speakers and have the time to commit to the program.”
  • Engaging - The final stage of engaging ensures that all activities are appropriate for the client, the volunteer patient, and the intended audience. HAS ensures that privacy and regulatory issues are in place, as well as addressing issues such as training, monitoring, and documentation to ensure peace of mind for both the patient and the client company.

McCoy also mentioned the difference between achieving patient centricity in the US versus Europe. Since the US is allowed to work directly with patients, this makes the process easier. In Europe, where companies need to work through patient advocacy groups and other non-profit patient organizations, the approach is indirect. However, she has found that the need in Europe to get approval to speak to patients, and the creativity required to reach them, can actually make a company even more conscious of the importance of being patient-centric.

The challenges of embracing a patient-centric culture

“The most significant point of departure for us is to understand where the desire to be patient-centric began,” says McCoy. For example, if top management want to drive the idea, her job might be to get middle management to understand it. If, however, the desire stems from middle management, she may need to work with top management to sell the concept to them and to get them to provide funding. “Change is difficult,” she explains, “and we need to help management understand the value but also the extra work required to get it done.” She adds that some companies talk about being patient-centric but are still mostly focused on what is best for the organization. Over time, she finds that her clients grow to understand that it doesn’t need to be one or the other.

Another problem McCoy identifies is getting departments to work together. “The pharma industry is notoriously siloed,” she says, “and often for valid reasons. However, for patient centricity, you need those silos to come down, and this can be a challenge.” The other test she sees is getting employees to consider patients as their day-to-day job. Furthermore, she feels that companies need to know that patients aren’t ‘talent’ – they’re volunteers who are willing to share their stories. She recommends that they be treated very differently from a co-worker: “Treat them the way you’d treat a family member,” she suggests, while also cautioning that these volunteer patients are assisting because they don’t want others to struggle the way they did and therefore might have challenges that should be accommodated.

McCoy’s advice is to focus on inclusiveness with patients, and to find out as soon as possible what they want or need. One encouraging factor, she notes, is that the more internal pharma staff engage with patients, the more patient-centric they become - it’s hard for them not to be touched by the stories they hear.


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