At CG Life, we focus on helping stakeholders learn about and understand the significance of important advances that are shaping the future of healthcare.  In many of those cases, we highlight the impact that a medical innovation will have on patients and their families.  The news about a breakthrough medicine or technology resonates most powerfully when we talk in specific terms about how much longer patients will live, how their health will improve or no longer decline, and how it will affect their experience of daily living.

Beyond the Data

In many cases, the impact of an advance in medicine on patients is driven by and explained by data, such as the percentage of treated patients who show improvements in a clinical trial or in disease performance markers. But in our experience, telling the story of patient benefit purely through data can have significant limitations. The benefits become more tangible and more dynamic when they are presented from the patient’s perspective. A patient or parent in a media interview talking about how a medical breakthrough affected his or her life can be more impactful and help audiences appreciate the benefits of a new therapy.

For instance, in the late 1980s we worked with parents of children with Gaucher disease, a rare genetic disorder. To build awareness of the disease, which was not widely known or understood, we worked with many parents who spoke of the overwhelming grief of watching their children decline with no hope.

This outreach coincided with development of one of the very earliest bioengineered drugs- a treatment for Gaucher disease. In our outreach strategy, we told the story of the data that supported an FDA approval.  We talked about how lipid levels in the blood and internal organs were reduced.  How enlargement of the liver and spleen were reversed.  And while the data were remarkable, in terms of building awareness, nothing compared to a mom talking about her young son acting more like a healthy boy – playing, eating normally, experiencing less pain.

The Strength of Patient Communities

What does this mean for us as healthcare communicators?  It challenges us to always try to look for ways to incorporate the patient perspective in efforts to share information about advances in medical science.  Not because a company will sell more products.  But because there is no way to tell the complete story without that perspective.  We are not really doing our jobs – not fully explaining a healthcare story to any stakeholder – without helping them understand the impact that an advance will have on patients.  And the best people to tell that story will be the patients and caregivers involved.

In the early days, when we first considered asking patients and families affected by rare diseases to share their stories, we assumed it would be a significant challenge.  Why would anyone want to talk about the most painful and devastating circumstances in their lives with strangers? But through our work, we’ve learned that patient communities, especially rare disease communities, are truly remarkable.  Many community members – patients, parents, and caregivers – want to support others by sharing their stories. They want to help others learn about the impact of a disease and how best to protect their health and cope both physically and emotionally.  They want to help shape protocols in clinical trials and patient support programs.  And they feel a sense of pride in being able to help others facing the same challenges they faced.

Our Responsibility to Patients

In communications strategies where we have the opportunity to work with patients to build awareness, healthcare communications specialists also have some important responsibilities.  There must be a commitment to transparency – ensuring that patients understand the impact that their input will have. They must be able to share information freely and we must respect any limitations they choose to have in place.  And they should fully understand how any information they provide will be used.

We must at all times use the information they provide appropriately and with proper context.  There can be severe risks to a client’s reputation or community support if an agency does not meet the highest professional and ethical standards in planning and executing strategic programs in collaboration with patients. Fortunately, there are now roadmaps and regulatory guidelines in place that represent best practices in working with patients and caregivers, as well as communications specialists who have established track records in engaging with community members.

Leaders in medical communications also recognize that there can now be significant risks in NOT including patients in strategies to build awareness or communicate about important advances in healthcare.  Beyond the fact that communications might not be as effective, many patient advocacy leaders now either expect (or sometimes demand) that perspectives from their community be presented by members of that community.  They often expect (and deserve) a place at the table in planning and executing communications strategies. Fortunately, with this new reality, engaging with members of a disease community across many forms of healthcare communication is beneficial to everyone involved.