free full access: The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients

Conclusions

Participants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR (personal health records) may be of benefit for informing patients, further research is required to investigate the impact on the experiences of patients, their participation in their care, their relationships with the health care team, and their health outcomes.

Clinical Trial Participants Are There Willingly - in Public Health & Policy, Clinical Trials

About consumer participation | Cochrane Consumer Network

Note: "prioritise topics for new reviews"
In response to a request from the Cochrane Network, ovarian cancer women/caregivers were asked to respond to a survey regarding priortisation. This was done, in part, through the ACOR Ovarian Cancer group (http://www.acor.org). A large response was received and the Cochrane Network responded in a positive manner.

 

About consumer participation

The authors of Cochrane reviews may consider a question for a review because of their own interests and experiences as a clinician or a healthcare researcher. These are not always the questions that are of most concern to healthcare consumers and their families and carers.

It is not easy for us, the public, to understand how the questions for Cochrane reviews need to be stated in order to be ‘answerable’ in research terms. You can learn more about this from our Training materials on the Resources webpage.

The purpose of consumer input during the review process is to:

• ensure that a review question is relevant to people requiring health care and who are offered an intervention by their healthcare providers;
• identify outcomes from healthcare interventions that are important for consumers – which may be different from those identified by service providers;
• improve access to reviews by ensuring that the review can be read by a wide audience, and the language is sensitive to consumers;
• weigh up the benefits of a healthcare intervention against the potential harms – from a healthcare user perspective;
• prioritise topics for new reviews.

Patient Participation: Current Knowledge and Applicability to Patient Safety — Mayo Clinic Proceedings

"...Patient-related factors, such as acceptance of the new patient role, lack of medical knowledge, lack of confidence, comorbidity, and various sociodemographic parameters, all affect willingness to participate in the health care process. Among health care workers, the acceptance and promotion of patient participation are influenced by other issues, including the desire to maintain control, lack of time, personal beliefs, type of illness, and training in patient-caregiver relationships. Social status, specialty, ethnic origin, and the stakes involved also influence patient and health care worker acceptance.