Patient Design: The Importance of Including Patients in Designing Health Care

Abstract

A paradigm shift is underway in the patient-clinician relationship, driven by irreversible changes in information access, yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly even though we call it “patient centered.” Humanity endured centuries in which even doctors had little idea what the patient’s problem really was. Science slowly solved that, and for a century, only doctors could know what was worth knowing. Today, the rise of the internet and digital health has led to the end of that era. We are already witnessing early signs of the era of participatory health: genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. This may feel like a threat to the physician’s sacred role, but it is no more so than when physicians adopted informed consent and then shared decision-making. In the 2010s, many pharmaceutical, medical, and health care companies started to use patient centricity as a mantra. We argue that to drive this paradigm change fully into existence, we need to shift “patient centricity” from a relatively passive process, driven by industry needs, into a far more active, collaborative process driven by both parties’ needs and preferences. To build this new world of practice and workflow, we simply must engage with patients as true partners. To achieve medicine’s new potential, it must be optimized around the wants and priorities of the ultimate stakeholder—the party that has the most at stake in how it all plays out: the patient. Patient design is the approach that can make it happen.

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

“…A recent review confirms this trend by showing that apart from the United Kingdom, where PPI is most established in Europe, significant work is taking place in the Netherlands and Scandinavian countries 46 . Thus, multiple forces were supporting this partnership research approach, which gave the members a feeling that a paradigm shift is possible, acknowledging the involvement of patients at the highest level of decision‐making, as ‘patient designers’ 3 . Jordan et al 47 emphasize the importance of building on expectations as a starting point for discussing roles and responsibilities in the team, as the failure to fulfil expectations could lead to disillusionment and disengagement.…”

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

“…Thus, to successfully support regulatory approval and implementation of patient-driven innovations in healthcare may require an approach whereby healthcare professionals and researchers recognise and collaborate with patient innovators as independent innovation sources 122. Patient design has been suggested as an approach to engage with patients as true partners in a collaborative process 3. From previous research, there is evidence that cocreation with patients in the design and planning of care can benefit patient–professional relationships, improve health outcomes and also increase satisfaction among clinicians 123.…”

“…Multiple policy documents emphasise the importance of involving patients in care decisions and processes 1–3. Also, many patients and their informal caregivers (eg, parents and family members), increasingly empowered by the improved access to information and technology, expect to actively participate in the decision-making regarding their care 3.…”

How Participatory Health Informatics Catalyzes One Digital Health

“…This in turn increases empowerment [9]. To date, minimal studies have focused on low literacy groups, digital health literacy has infrequently been addressed in the development of digital health interventions, baseline assessment of digital health literacy is scantly performed, consumer involvement in intervention design has been limited, and accessibility is infrequently addressed [48]. Hence, strategies are needed to support target users of PHI technologies.…”