Setting the research agenda

Active involvement in health research entails more than being a research subject. “It means participation in setting the research agenda, in the way the research is carried out and how it should be implemented”, states the European Patient Network for Medical Research and Health. “Your personal experiences of living with a certain illness are very relevant to this.”

 

“Medical research is becoming more interactive”, declares science communicator Fred Balvert of Erasmus University Medical Center Rotterdam (the Netherlands). “Researchers at Erasmus MC are preparing more interactive studies. They will use mobile devices and study participants will receive direct feedback from the scientists”.

 

Getting access to your medical record

One way to involve you more actively in your care is giving you access to your personal health record. Scientists of the European SUSTAINS project have developed services to make this possible. The project finished in December 2014.

 

SUSTAINS project coordinator Benny Eklund concludes that patient access to their medical record leads to more accurate medical data: "The information in the personal health record becomes a joint resource for both the patient and health professional”, he explains. “This leads to increased scrutiny and updating of medical information. On top of this, economic benefits arise from reductions in the need for face-to-face consultations and reductions in unnecessary prescribing."

 

In the USA, The OpenNotes initiative gives patients access to the visit notes written by their doctors, nurses, or other clinicians. “We’re basically saying, ‘Why should that be the doctor’s black box? Why shouldn’t patients have a right to read what we’re thinking? After all, it’s their body’”, lead researcher Dr Tom Delbanco says in The Rheumatologist.

 

Focus on patient-centred health research

In 2015, www.HorizonHealth.eu will focus on patient-centred health research. We will publish a series of Projects and In Focus articles related to patient participation, patient empowerment and personalized medicine.

 

Related projects and further reading