Making Patient Engagement Work (Part 2)

Making Patient Engagement Work

Last week’s post Patient Experience Data and the Role of Social Media Part 1 discussed the wealth of information about the patient experience that can be found in social media.  Social media interactions are becoming more and more important as patients get involved in the decision making process around their health.

Information exchange is essential to these interactions.  Patient engagement–bringing the patient voice into research, development and through the entire product life cycle–requires transparency.

Pharmaceutical companies are behind the curve on this.  While a 2015 survey of 75 pharmaceutical companies found that 76% have, or are thinking about starting, a patient advocacy program, less than 20% of those that have such programs have staff for it and 39% have a budget of less than $50,000.1

There has to be significant movement from “thinking about” patient engagement programs to establishing and integrating patient engagement in order to obtain and use patient experience data.  The product or brand culture is deeply entrenched in pharma but the passage of the 21st Century Cures Act might speed the change from a product-driven to a patient-driven approach.


And a successful patient engagement strategy can have far-reaching benefits.  Patient experience data can positively influence the development pipeline, clinical success and the way the patients perceive the product.

During the development stage, patients and caregivers can provide an all-encompassing grasp of the patient journey – what it is like to live with and through the disease.  Finding out the unmet needs of the people affected by illness provides inspiration and ideas to scientists, researchers and others across the organization.

During launch, feedback from patients can provide information on the challenges in using the medication and in side effects.  Involving patients’ perspective can help in development of patient outcome measures.

Relationships with patients can help in establishing eligibility criteria for clinical trials and have the potential to improve recruitment into clinical trials.  And administrators and Board members can learn where investment will benefit patients’ experience.

These benefits are significant.  Moreover, learning from patients’ experiences can provide insights for improving those experiences.

True Interaction

But the relationship needs to go both ways and pharma companies should offer patients transparency in costs and pricing – a major concern for patients that can negatively impact benefits from treatment, outcome measures and patient experience data.

If patients are not taking their medications consistently because they are too expensive to buy, the losses for the industry are far beyond financial.  Those medications lose their potency and the work and energy that it took to generate them is lost.

Discussing an array of topics with patients, including successes and failures in drug development can increase goodwill.  Building trust can mean better patient experience data.  Yet these relationships should not be considered a function of public relations or marketing.  The relationships should be about information exchange.  Learning to “speak patient” will help companies communicate better.  To learn more about speaking “patient,” download our new e-book “How Does Pharma Learn to Speak “Patient”?

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The advantages of implementing patient experience data can be loyalty, positive word-of- mouth endorsements and even resilience to negative information.  A feedback loop after launching a new product can be instrumental in improving the next generation of products and refining patient support services. Furthering patient understanding of treatments and managing expectations for therapy are payoffs of investment in patient engagement.

As competition between brands and products continues, engaging in this change is critical.

Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.