From passengers to co-pilots: Patient roles expand

Submitted by GAtherton on 7 July 2015

 For most of history, patients have been the passive recipients of medical care with little or no role in research. Even as research subjects, patients were not required to give informed consent prior to adoption of the Nuremburg Code in 1947. Since then, patient participation has expanded dramatically, and today, opportunities abound to serve as active partners in defining and prioritizing research questions and solutions. But how do we work towards making patient involvement live up to its promise? Quoting Anderson & McCleary:

To fulfill the prediction that patient engagement will be the blockbuster drug of the century, we offer five observations to guide the path forward:

• There is a need to expand the capacity of all participants—industry, academia, government, and patient organizations—to engage patients in biomedical research, medical product development, regulatory decision making, and health care delivery. We must understand the full range of patient experiences and expectations across a representative cross section of individuals with a particular diagnosis or collection of conditions.
• Developing appropriate, scalable, sustainable methods and practices will require collaboration, experimentation, coordination, and transparency. Multiple types of expertise will be needed, and adoption will be highly iterative and require extreme focus on the goal: improved patient outcomes.
• It’s too early to tout emerging practices as being “best,” and standards are likely to change rapidly. T is may challenge resources and introduce new sources of uncertainty, especially at first. We may all need to tolerate more turbulence in the ascent, with our seatbelts fastened, before we reach a comfortable cruising altitude.
• Different diseases, disease communities, stages of disease, and stages of life might warrant distinct approaches to patient engagement and integration of patient input. The role of the caregiver and family members is clear in pediatric disorders, disabilities, and conditions associated with aging such as Alzheimer’s disease; individuals who surround the patients also should be factored into our understanding of unmet medical needs in mental-health conditions such as addiction and schizophrenia.
• Patients are found not only in conventional settings, such as disease-specific foundations and clinics, but also living their lives as members of social media networks and local community organizations. We need to rethink and expand the settings in which we recruit and equip individuals to be informed participants in research and care activities. This will take time to implement.

Link to full article