A personalized and holistic patient support program for ... Image 1

A personalized and holistic patient support program for better understanding of a rare skin condition

Supporting patients living with a rare disease

Patients living with a rare condition face specific challenges: scarceness of information resources, uncertainty, in addition to psychological and social effects of disease management. Healthcare providers often lack tools and resources to support their patients while offering the best treatment and follow-up. To support patients suffering from a rare skin condition characterized by painful flares, our client, a leading global life science company, wanted to build an effective Patient Support Program (PSP) capable of meeting multiple needs: empowering patients, keeping them engaged with
their treatment and understanding their condition better.

A fully personalized program

The PSP built by Observia is holistic by nature, thanks to a combination of functionalities addressing all the patient’s needs. As the understanding of this rare condition was a top priority of our
client, we integrated a Patient Reported Outcome (PRO) feature, which allows patients to share and track their symptoms along their journey. This real-life data, collected in a secured and anonymized way, helps our client get a better understanding of the disease. Patients also have access to a reliable information center, helping them learn about their disease and how to best live with it. This content is personalized for each patient, to provide them with a unique experience, adapted to their needs. Such a level of personalization is achieved through Observia’s in-house tools:
d.tells™, a personalization engine fed by SPURTM, Observia’s behavioral diagnostic tool, that adapts the topics presented to the patient as well as the tone of the text, the channel to distribute
content, and the frequency of the messages; and Observia Patient Cloud™ (OPCTM), a health platform that brings together all services and offers an excellent user experience.

- Unique personalized user experience

- Gamified engagement challenges

- Patients' liberty in the choice of preferred functionalities



“Creating a PSP for patients living with a rare disease is a challenge because of the limited information available and the complexity of understanding patients’ needs. However, by using personalization tools, it is possible to ensure that each patient receives the support they need at the right time, frequency, and channel. I am personally very happy with the collaborative work and sharing of knowledge with our client that made possible the conception of an impactful support solution. We, at Observia, are also proud to contribute to the improvement of medical knowledge about this condition, for the benefit of patients, healthcare professionals, and the scientific community.”
Olman Hidalgo Muñoz
Project Lead, Observia


gamified challenges
topics in the information center
weeks engagement plan
questionnaires (quality of life & disease impact)


With the developed PSP, patients have access to a wide range of features to support them daily in the management of their disease. Thanks to the information patients provide within the platform, the solution can automatically personalize a unique 18-week program to help each of them being engaged and supported the way they need it.



With this truly holistic PSP, personalized through Observia’s suite of products: SPUR, d.tells and OPC, patients have access to high quality support and are empowered by reliable information about their disease. They are engaged in the solution through the gamification of short challenges and encouraged by motivational notifications. A scalable solution designed at global level and already live in the USA, this PSP will be adapted for multiple countries with different health systems, cultures and needs. The program itself is still growing, with 26 new content topics to be added soon and 6 features already in development, such as patient community, skin gallery and treatment reminders.


Download the Success Story


See also

Scientific communications

A multiple-cohort analysis of the SPUR 6/24 patient-reported adherence tool


Clinical Ink and Observia: Pioneering Personalized Patient Engagement in Clinical Trials


By your side in 2024: Happy Holidays from Observia!

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