Working with Patient Advocacy Groups—Commit for the Long Term

It has long been a major goal of the life science industry to be seen as a part of the patient community. One of the ways companies reach out to patients is through advocacy organizations.

About 2.3 million nonprofit organizations operate in the United States. The sector contributed $804.8 billion to the U.S. economy in 2010, making up 5.5% of gross domestic product. In 2011 almost 27% of all adults in the U.S. contributed a total of 15.2 billion hours.

While these figures, taken from the Urban Institute’s 2012 Nonprofit Almanac, highlight the relevancy of the nonprofit sector, it is not necessarily the numbers that make patient organizations an integral part of the healthcare fabric. It is because nonprofit organizations address needs that would otherwise fall by the wayside. Forward-thinking, patient-centric companies realize that these needs are important and are therefore seeking to fill positions for “advocacy relations.”

The world of patient organizations is gigantic. It is not uncommon to observe disagreement among and within those bodies as to what is the right thing to do to help their constituents. Dedicating full-time managers to the task of relaxing the relationship with the patient world certainly helps in dealing with the amount of diversity in this field, but there is much more to it. So then what are the key success factors for working with patient organizations?

Invite The Patient To The Table

First and foremost: Cooperation can only blossom if it is mutually beneficial. Companies that are most successful at working with advocacy don’t assume that they can simply strike a bilateral deal with an organization. They know that any agreement really involves at least one additional stakeholder: The patients. Even though patients may not put their signature on a contract, their needs have to be taken into account throughout the “cooperation lifecycle.”

Let’s illustrate this with an example of a patient outreach program in the cancer space. The idea was to organize educational seminars at patient centers run by a large nonprofit organization. While the organization agreed that the program would greatly benefit their constituents, they were also initially a bit apprehensive at becoming involved in “direct-to-consumer” communication. But uneasiness was dispelled after it was explained that the seminars would involve a nationally renowned expert in this area, along with an HCP, and a patient liaison.

After the program, one patient in the audience, who was also a doctor, said: “Seeing [the patient liaison] standing before me, looking so good and so full of life, with the same diagnosis I have, filled my heart with hope. Nothing in my professional training has ever had such an impact on me.” The organization benefitted from the record turnout of the high-profile event. The director of one of the centers said that they were able to showcase their services—from a resource library to childcare—to individuals who had never been there, or who may have visited once early on in their journey with cancer.

Company representatives reported a new sense of purpose after making such an event possible. Many who felt “barely tolerated” as they made their sales calls now found themselves enveloped in the vocal gratitude in the room.

Create Aligned and Complementary Goals

On the surface, all nonprofit organizations active in the patient space have, or claim to have, one single priority: Fulfilling patients’ unmet needs, including providing or advocating for financial assistance, public policy, access to medical care, legal assistance, information and emotional support. However, the variety of organizations is very wide, stretching from local self-help groups to national political lobbyists like, from financial support networks to specialized information providers, and to those that do all of the above, such as the American Heart Association. Each one has a different approach, unique beliefs and convictions.

The first step for commercial enterprises that want to work with patient organizations is to determine who best to work with and what to do to become a viable partner for the nonprofit in question. In other words, a company seeking only their own benefit will have a very hard time becoming an accepted partner of the advocacy world. Aligning company goals with that of the envisaged advocacy group is the key condition for any cooperation between advocacy and industry to be a success.

While alignment with partnering advocacy groups is an absolute necessity, it bears in itself its own challenge: Not to be in competition with the patient organization you work with. The number one strategy to avoid situations of aligned but competing activity in the patient space is to fill a void. Patient advocacy is typically restricted by limited funds. Even organizations with solid financials cannot “buy” impact. They all rely on community involvement and have to engage with external suppliers and helpers in order to get the right kind of help to the right people at the right time. Patient advocacy groups are most likely to welcome products, services and activities that are aligned yet complementary to their own offerings—and that they could otherwise not provide themselves.

Demonstrate Sincerity, Trustworthiness And Respect

A great example of this is the chronic disease web platform, (pictured below). When the patient social network started out as a cancer-focused community, its founder David Wasilewski spoke to the American Cancer Society (ACS). At that time, the ACS wanted to create a cancer social network. Noting the demand in the patient community for such a service, and that there was a possibility to use a ready-made system, a partnership was formed.


Charitable organizations will always insist on their independence. Companies that respect those boundaries of integrity are in a good position to bring a cooperative working relationship to fruition.

When it comes to financial contributions, donations made to charitable organizations need to be transparent and, most importantly, unconditional. Companies striving to become an accepted partner in the patient advocacy space have to demonstrate a track record of sincerity and trustworthiness. They must build and maintain a corporate culture that values community work and commitment to those affected by disease. Management and employees alike must embody these standards.

Put Some Skin in the Game

Companies involved with patient organizations need to be dedicated to commitments they make to the patient community. Working with a patient organization and pulling out shortly afterwards is hardly an advisable strategy. This will certainly make advocacy organizations wary to work with that company again.

Patient outreach programs can and should be continuously optimized, but they need to be treated as a long-term strategy rather than a short-term tactic. A company that commits to serving patients’ needs has to put skin—money, time, training and education—in the game in order to remain credible and to be effective. For most patient organizations, working with industry is not a must or a given, unless their industry partners can offer aligned and complementary resources they would be unable to provide for themselves. It is industry’s role to stand behind the shared goals with the unique resources they can bring to the table, such as contact networks, financial strength, scientific competency and efficient management structures.

With the advent of “advocacy relations,” interactions between the life science industry and patient organizations have become more and more relaxed over the last decade or so. There is an increasing understanding on both sides that they can only advance the cause of patients through genuine cooperation based on trust. It remains to be seen if the future holds more or less industry-advocacy collaboration. Working daily in a space where the two worlds intersect, my bet is that we will see more instances of collaboration, as it becomes an increasing commercial necessity for pharma and biotech companies to reach out to the patient world as a whole, and patient organizations realize they can do more for the community with the help of industry partners.

Patients need both medical treatment that cures or helps manage their condition as well as support from programs tailored to their needs, regardless of whether those programs originate in the commercial or in the nonprofit world. What counts is that people who find themselves in their darkest hours know they are not alone, and that there are organizations—people—who care. We all have work to do. We can do it better together.

  • Jennifer Mason

    Jennifer Mason, MPH is Chief Patient Support Officer at Snow Companies. Jenn is a transformational leader who has built industry-leading compliance processes and an infrastructure backbone that has brought Snow Companies to the top of the patient engagement game. She is a recipient of the PM360 ELITE 100 Award. Living with metastatic carcinoid cancer, Jenn can see health through many different lenses—patient, brand, and agency.


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