ISPOR 2015: Engaging & Providing Value to Patients

Numerous sessions and meetings at this year’s ISPOR conference focused on the importance of collecting patient data outside of clinical settings (e.g. a daily pain diary via the patient’s smartphone or tablet). Combining this patient data with that captured in clinics leads to richer data sets and more meaningful insights. The challenge: how do we deliver more value to patients in order to keep them engaged and motivated throughout clinical trials?

Patient data is priceless to payers, pharmaceutical companies, and providers. Often times, there is limited potential benefit in return. Granted, their data could help unlock a new treatment, or perhaps a cure, but to reach this point is a lengthy process that is not guaranteed. Payers and pharma organizations are quickly realizing they need to provide extra benefits to patients for their participation in clinical trials and other health research. Here are three examples of how this could be accomplished.


The delivery of content to patients enrolled in clinical trials is a great value add to patients suffering from a chronic condition.  As patients regularly interact with surveys and forms, their patient data can be used to deliver richer content geared more toward their conditions and needs.  For instance, a diabetic indicating they are struggling with food choices could be delivered a weekly food plan and some diabetic friendly recipes with shopping tips.  By delivering tailored content to the patient, they are able to make better food choices, live a healthier life, and successfully manage their condition.


Using real time analytics, patients can be provided a dashboard view of how their condition compares to others who are living with the same symptoms. This can help answer questions such as:

  • How do I compare to others with my condition?
  • Are others experiencing similar pain levels?
  • Does anyone else feel as tired as I do?

The more patient data provided, the greater and richer these benchmarking abilities become. Personalized content and analytics creates a sense of empowerment for the patient, providing motivation to continue participating in clinical trials to learn more about their condition.


A patient can now interact with other patients suffering from similar chronic diseases or ailments and utilize the experiences, insights, and support of others to help them manage their condition. For example, patients can ask others about potential side effects of a medication, such as ringing in the ears, and find out how to avoid them or other alternative medicines they can try. This type of interaction with similar patients helps create a sense of community and makes one realize they are not alone.

An excellent example of an online social community revolving around a specific chronic disease is the COPD Foundation’s, COPD360social. The online community allows members to learn about events, participate in research, and chat with experts and similar others. Providing this resource builds a sense of togetherness and creates motivation (e.g. socializing with similar others) to participate in clinical trials.

Organizations conducting outcomes research and late phase clinical trials must engage with patients to add more value to retain them throughout the study. They can create a new experience for these patients to provide them everyday value by utilizing tailored content, feedback and analytics, and peer-to-peer interactions.  I was pleased to learn during my time at ISPOR that a new trend is occurring where valuable patient data is being leveraged not only to better inform medical decisions and treatments, but to also educate and involve patients more in the clinical trials process and their overall health.

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