Over 130 million Americans struggle with one or more chronic diseases, a number that is expected to grow to 160 million through 2020. In a rush to deal with this crisis, healthcare and life science companies are constantly building elaborate new digital tools meant to support healthcare providers (HCPs), patients and caregivers. These technologies are often designed based on a desire to collect, consolidate and share biomedical data. Missing from their design, however, is a meaningful consideration of the social, physical, psychological and emotional dimensions that shape experiences of chronic illness.
To design more impactful solutions, companies must recognize a core tension that exists between the lived experience of chronic illness and the expertise of HCPs.
Both HCPs and patients are guilty of over-privileging medical expertise. This is largely due to the primacy of the patient-centric care model, which focuses solely on the clinical encounter. The person becomes a patient; their body is scrutinized and tested, and they are judged by their adherence to behaviors deemed appropriate by healthcare systems. HCP expertise is often imposed on patients in the form of diagnoses and treatment plans. In this context, people with chronic illness strive for a sense of fluency as they grapple with the terms and technical practices that shape diagnoses and treatment plans.
HCPs, on the other hand, see themselves as possessing expertise. In contrast to patients, they do not usually feel compelled to become fluent in the narratives of daily routines, struggles and triumphs that people encounter as they work to manage their health and wellness. Yet, unlike acute moments of medical crisis, chronic illness exists well beyond the clinic. It is experienced equally, if not more so, in the spaces that patients occupy in their daily lives: houses, parks, workplaces, shelters, social settings and significant cultural events, to name a few. Across these different settings, people may struggle with pain, disabilities, finances and relationships. If these struggles prevent them from adhering to their treatment plans, they are often labeled as “bad” patients.
The experience of Andrea, a young woman who experienced symptoms of gastrointestinal distress for years, reflects these issues. She spent years with intense stomach pain, visiting her general practitioner and the emergency room whenever her flare-ups became overwhelming. Though she was never given a diagnosis, Andrea continued to receive prescriptions for new drugs. She found this contradiction the most perplexing part of her experience.
Andrea also felt like it was up to her to learn the language of medicine, including disease terminology, complications and symptoms. In contrast, she found that her doctors, nurses and pharmacists seemed uninterested in learning about her needs, or about her broader concerns around managing her condition on a daily basis. Andrea wanted to be taken seriously, as a patient and as a whole person; without this feeling of mutual respect, she soon found that hopelessness and distrust became the basis of her relationship with the healthcare system.
Assemble for chronic collectivity
Andrea and her care team exemplify tensions between two ways of knowing the physical, intellectual and emotional dimensions of chronic disease. In reality, HCPs, patients and caregivers are all fallible—particularly as they confront the unpredictability and uncertainty that defines chronic illness.
Overcoming these tensions and disconnects requires a model founded on what we call chronic collectivity. Chronic collectivity pushes beyond siloed models of patient-centric care, in which disease is only experienced by patients and treated by expert HCPs. A chronic collective includes a fluctuating ensemble of people who navigate an interconnected and entangled experience of chronic illness. Embracing chronic collectivity means focusing on the overlapping — and, at times, conflicting — needs and experiences of patients, their loved ones and their HCPs. With collective responsibility and collaboration, all parties can contribute to a workable balance between patienthood and personhood as part of a long-term model of care. They can do so by incorporating these design principles:
Build care ownership. People should be the primary agents of change in their own health and wellness journeys. Regardless of age, they should be allowed to determine how they interact with care organizations. Technological and data-driven health and wellness solutions that track patient engagement can be leveraged to enhance care ownership.
Design for the collective. Designing for the collective means accounting for the human fallibility of everyone engaged in care experiences and practices. Building models of engagement that acknowledge the impact and burden of care for all parties is the only way to shift away from a patient-centric model of acute care and toward a collective model that addresses the experiences of chronic illness.
Elevate all forms of expertise. Being open to the expertise of patients and their loved ones should elevate, not diminish, the role of professional expertise in healthcare encounters. By tuning HCPs in to the social, emotional and psychological dimensions of chronic illness, solutions designed for chronic collectivity should enable HCPs to work at the top of their game.
Engagement strategies shaped by chronic collectivity will encompass all aspects of life that define the experience of chronic illness, from the mundane to the profound. Incorporating these forms of expertise with traditional medical expertise will help HCPs, patients and caregivers work together to effectively manage chronic illness. This, in turn, will result in better outcomes, reduced healthcare costs and improved physician morale. Ultimately, it will enable people with chronic illness to lead lives defined by their humanity, not their disease.