Focus on data owners and their trust. Insights from design research and notes from the field.
The general consensus is that the current healthcare system is in disrepair. There’s a growing view—from doctors to insurers to analysts—that to fix it, what’s needed is a gradual transformation of the current model into an open system of connected stakeholders, capable of improving the quality of care with field experts, advanced technology, and unprecedented volumes of data. That vision is predicated on the fundamental contribution expected from individuals—through their data and active participation—to unlock the future of healthcare.
In such a picture the individual is not a passive “healthcare consumer.” By sharing useful information such as medical history, genome and lifestyle data, past treatment experience, and preventive actions, etc., the individual becomes a proactive shareholder of value supporting not only personal health goals but a collective endeavor with far greater impact: the advancement of science and medicine to make precision healthcare finally available to everyone.
Pharmaceutical, healthcare, and insurance companies are making significant investments to deliver technology ensuring safe, convenient, and efficient collection and sharing of data. The ultimate goal is to minimize the ineffective‚—although lucrative—“trial and error” process, reduce cost of care, and deliver effective outcomes, not just products and services. However, in our experience it doesn’t matter how easy and allegedly safe it is to share personal information if we don’t have full understanding and control over its use, as well as its benefits and potential implications of our privacy.
For this and many other challenges, design is often associated with the creation of artifacts,e.g. apps that collect and report data through a compelling user experience. Although that’s not incorrect, the success and quality of UX are predicated on the crucial capability of design in determining,in this case, the qualities of what different groups of individuals consider the experience of being in control and trusting.
Several design research projects I conducted with my teams in the U.S. led to common conclusions across the board:
The CEO of my Health: What is ascribed to the notion of trust is based on the qualities of positive experiences with healthcare professionals. Specifically, those experiences that led to successful outcomes, namely, demonstrated care and empathy for the patients by providing honest, unconditioned, transparent information—guiding who preferred to be guided, and empowering those who wanted to be a decision maker.
Control and Agency: Control and agency are based on the fundamental concept of ownership over personal information, expressed as the ability to understand the benefits of its collection and determine what type of personal data should be shareable: for what reason, with whom, and for how long.
According to these and other more specific insights, it became apparent that research organizations and businesses should not focus on data without considering who’s the source and owner of that information, and their context, value systems, beliefs and knowledge, and finally what guarantees and incentives are required.
In 2016, U.S. President Obama brought everyone’s attention to a simple fact: "Once you understand that [data] is yours and you have agency, as you consult with doctors, you're able to be a more effective advocate" for your health. There are signs that as awareness keeps growing, the cost of generating reliable data is decreasing, and the value of personal data owned by individuals continues to expand. In such context the most successful players in the healthcare space will be those rooting their offering in the space of meaning, value, and trust shared by their customers.
By making significant investments in design and placing it at the center of data, healthcare companies are poised to improve their customers’ care through better products and services all while enhancing the vitality of the industry at large.