Health Care : Current Reviews

RareLife solutions, USA

Publications

• Short Communication   
  The potential role and impact of patients, advocates, and caregivers on medical publications and acceptance of treatments in rare diseases
  Author(s): Mukund Nori
  
  In an era of massive data proliferation, trusted information is very difficult to find. This situation is exacerbated in rare diseases where despite there being > 7000 types, they comprise < 0.2% of the medical literature. Furthermore, patients, advocates, and caregivers (PACs) are almost nonexistent as authors even though they are experts in their own diseases and often more knowledgeable than medical professionals. In recent years, there is an increased interest in having PACs as co-equal authors on medical manuscripts. Articles authored or coauthored by PACs can have far-reaching impact, including identifying problems with access to medication or post-treatment support and influencing change of regulatory decisions that can affect all patients with that particular rare disease. The value of having PACs as authors cannot be overstated. Including PACs as authors on publications.. View more»
  

  Abstract PDF