Emerging Targets: Care Partners, Underserved Communities, Health Activists

The pharmaceutical industry has always taken a multi-pronged approach to communication. But for a long time it was one of the industry’s distinguishing marks that the focus was on healthcare professionals (HCPs). Certainly, doctors are very important stakeholders. Yet in most industries, the most important stakeholder is the client.

If we define the client as someone who makes a purchase in order to benefit from a good or service, then the pharmaceutical industry has a unique problem: To use a common marketing analogy—the client’s head is separate from the heart, and the wallet is some place else altogether. The decision-maker is different from the buyer; and the beneficiary is different from both the decision-maker and the one who pays. Additionally, a tight regulatory environment sets limits as to what is communicated to whom—so it is understandable that the most straightforward approach has been to seek proximity to HCPs and hope that payers and patients will follow suit.

This has changed significantly. We’ve witnessed an impressive expansion of pharma’s outreach over the past few decades. HCPs are still a central priority, and that will continue, but important and highly successful efforts have addressed patient-side treatment adherence. Similarly, with health policy changes throughout the developed world, payer communication has featured prominently on the agenda of several pharma conferences of late. However, HCPs, patients and payers are well-known targets, so let’s look at a few that are just as vital in moving the needle towards better health outcomes.

Care Partners—One Size Does Not Fit All

Studies show that the situation at home explains, to a large part, how true a patient will be to the prescribed regimen. Those once referred to as “caregivers” have become “care partners,” reflecting not just a politically correct terminology change, but also a more realistic view of what the role really encompasses. Most “give” care of some sort, certainly, but that is not all they do and it’s not a permanent one-way street. Some of them contribute to the treatment of their loved ones in very different ways than, for instance, what a nurse might do.

It is extremely important to avoid treating care partners as an afterthought with a one-size-fits-all approach. An adult child of a parent who suffers from dementia is in a very different position than a husband or a wife. Patient outreach programs that include, where appropriate, a daughter, a son, a husband, a wife, are poised to provide targets with personally relevant, authentic information and motivation. Customizing the messaging and the messenger to suit the appropriate care partner is likely to make a measurable difference in attitudes and behavior.

This rule of thumb is even more applicable to pediatric therapeutic areas. A parent of a young child with a disease will tend to be highly activated and do anything to help their loved one get better. Hearing from another mother or father in the same situation, learning about their experiences and decisions, is always welcome. Any outreach that can deliver this will make a huge difference.

One important rule that applies to patients is just as true for care partners: What you communicate is important, and so is where you communicate. Almost everybody frequents the Internet, but situations exist where other avenues (such as print or other physical media) are better suited to leaving a lasting impact. Not to forget that under compliance restrictions, only so much messaging is suitable for the web, let alone social media.

Depending on the disease category, an “average” care partner’s role will look vastly different, because different diseases affect different demographics. When working in a therapeutic area like age-related macular degeneration, the care partner might well be a married opposite-sex spouse, or maybe a daughter or son. With conditions that are sexually transmitted, the care partner situation is often different. In genetic diseases, such as hemophilia, we tend to encounter more intergenerational care support—a parent to a child or vice-versa—and often the care partnership is more reciprocal, less unilateral, because more than one family member might be affected. Finally, in the therapeutic areas more prevalent in minority communities, the family and hence, the care partner setup can be significantly different than in the population overall.

Multicultural Outreach to Serve the Underserved

Apart from indicating what the care partner situation may look like, socioeconomic backgrounds influence things such as insurance coverage, education, health literacy, or attitudes towards health. But most importantly, patient journeys vary greatly across different communities. To effectively reach members of specific groups, their unique set of experiences must be taken into account. For instance, it is not uncommon for Hispanic patients with epilepsy to be exposed to highly traumatizing experiences—sometimes their loved ones go as far as to believe the patient is possessed by evil spirits. Patients with a non-Hispanic background, even if they happen to be fluent in Spanish, are unlikely to share the same challenges. Patient outreach is therefore best practiced in consultation with peers from the same segment of the population.

Some communities are more exposed to certain disease risks than others. Hypertension affects more African Americans than Caucasians. A study published in the Annals of Internal Medicine in 2011 investigated whether hypertension in African Americans can be influenced through culturally appropriate storytelling via DVD. It found that the group receiving the DVDs had better blood pressure readings than the control group—so it is presumed that the videos had a positive behavioral effect.

Multiple myeloma is another disease that, for reasons unknown, has an incidence twice as high within the African American population as among Caucasians. Even though it is the second most prevalent blood cancer after non-Hodgkin’s lymphoma, multiple myeloma has received little awareness. The Multiple Myeloma Research Foundation reports: “Among African Americans, myeloma is one of the leading causes of cancer death.” So there is clearly a need for education and awareness, and industry has made an effort to address that need. The approach, again, was highly targeted, culturally appropriate storytelling on DVD, with footage of real-life African Americans who share their stories of living with multiple myeloma, or of caring for someone who does.

Designing DVDs as a physical medium for a pinpointed audience suggests highly relevant content, and allows for a customized presentation. The multiple myeloma DVD resonated strongly with the audience. Industry, various advocacy organizations, the Office of Minority Health and several individual health activists collaborated to achieve a shared goal. The initiative triggered a constructive dialog between these stakeholders to discuss the further development of such programs. It subsequently went on to win several awards in recognition of its impact.

Sponsoring Health Activists Can Be POLarizing

Well-planned patient and care partner outreach programs hold the potential to join voices from industry, government, advocacy groups and individual health activists, also known as patient opinion leaders (POLs). Affected individuals engaging in public health dialog are not a new phenomenon. For decades they have left a significant mark on health policy; a notable POL achievement being the introduction in the ’80s of expanded access, or compassionate use, legislation. With the advent of social media though, the relevance of individual activists has grown even further.

POLs are patients, yet they are a distinct audience. They demand information from industry that is relevant both for themselves and for their extended audiences. They tend to be better informed and have a deeper understanding of the underlying issues in healthcare than the average patient. This, coupled with the authenticity derived from being patients themselves, gives them reach and influence.

Engaging with POLs requires a customized approach. In fact, the way industry has started engaging with POLs is more reminiscent of classic media relations than of patient outreach. One important qualifier, of course, is that journalism is considered a profession, while health activism tends to be unpaid—and pursues idealistic goals. An industry-sponsored panel of POLs from various backgrounds looked into what makes these people tick. All of the health activists indicated their content was compelling and unbiased, which is why they are credible and continue to have a followership. There was no consensus among them on whether sponsorship by industry would, by default, undermine their credibility, but they all agreed that if it is possible at all to retain credibility, this backing must be transparent, and their content must remain independent.

Even if many POLs are reluctant to accept pharma contributions, the industry has an opportunity to play an important role by filling in the gaps. The POL panel found that most participants started their activity because they felt something was missing within their patient communities; something they strive to provide: Information, awareness, support, funding. These are all things the pharmaceutical and biotech industry can get involved in.

One of the POLs’ key stated goals is to educate patients to communicate effectively with their HCP, and particularly—to ask questions. Again, this is very similar to what industry-driven patient outreach programs are supposed to do. It is thus evident that pharma and POLs can easily complement each other’s initiatives. Many different forms of cooperation other than direct sponsorship are thinkable. Pharma and POLs just need to keep the lines of communication open for each other.

  • Brenda Snow

    Brenda Snow is Founder & CEO of Snow Companies. Brenda is widely regarded as the leading pioneer in patient engagement. Her full-service agency, Snow Companies, is now part of Omnicom Health Group and provides patient-focused initiatives that include Patient Ambassador programs, creative services, call center support and a growing number of patient leadership councils.


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