Despite sampling bias, the report concludes that, to enhance the potential to generate knowledge out of personal health data, creative solutions allowing individual rights to be respected, while providing access to high-quality and relevant PHD for research, must be developed.
About the Study
Surveys and interviews of three relevant stakeholder groups were conducted: individuals, researchers, and companies and key informants. Surveys were conducted online between August 1, 2013 and September 11, 2013, with 465 self-selected individuals and 134 self-selected researchers participating. A total of 35 interviews were completed (11 individuals, 9 researchers, and 15 companies/key informants).