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Patients organise and train doctors to provide better care

BMJ 2015; 351 doi: (Published 30 November 2015) Cite this as: BMJ 2015;351:h6318
  1. Sara Riggare, patient and doctoral student, Health Informatics Centre, Department for Learning, Informatics, Management, and Ethics, Karolinska Institutet, S-171 77 Stockholm, Sweden,
  2. Kenton T Unruh, research scientist, Department of Medicine, University of Washington, Seattle, WA 98104, USA
  1. Correspondence to: S Riggare sara.riggare{at}

Two patients explain the work they do to reduce their disease burden

Patients with complex chronic conditions face not only the biological burden of the disease itself but also the burden of treatment, which might be defined as “work that patients do to care for their health, problem focused strategies to facilitate self care, and factors that exacerbate the felt burden.”1

The burden of treatment is exacerbated because patients must align with institutional work processes that have been designed around institutional operations and clinicians’ needs. Sometimes patients have to reorganise and retrain clinicians to receive the high quality healthcare that is in our best interests.2

We both have Parkinson’s disease and experience a complex array of motor and non-motor symptoms. Here is a glimpse at the invisible work that, in our experience, leads to better care.

Assemble the best team

Many complex medical conditions are best …

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