In addition to the tangible benefits that come from including patients and caregivers including funding and quality of research, researchers may find other motivations to include patients and caregivers in their studies.  For instance, many researchers find personal enrichment.  Many articles have highlighted researchers’ motivations.  In particularly, they have reported researchers’ found including patients and caregivers:

    • “rewarding, enjoyable and made their work more meaningful and valuable”
    • “gave them confidence and reassurance they were going in the right direction”46
    • “reminded [them], merely by the presences of patients or carers, of the ultimate purpose of their own work and so be motivated further.”40
    • Led to “personal satisfaction and encouragement”30
    • “had given them the confidence to keep going with a study when recruitment was slower than anticipated. The researchers also reported that patient or community representatives had reassured them of the importance of the trial.” 14

The Director Translational Informatics and External Innovation at Johnson & Johnson, Anthony Rowe stated it best in a report by the European Federation of Pharmaceutical Industries and Associations Innovative Medicines Initiative:

By working with a [Patient Input Platform], you realise this data comes from patients living with a condition that causes daily hardship. That this data requires them to take days off work to provide. That it’s given in the hope that other coming after them will have better therapies. The hope that parents will not have to sit up all night watching their children struggling to breathe. That spreadsheet is no longer just a table of numbers but something much more important.47


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