This is an interesting question, and one that seems to spark debate. According to the results of a survey by the California HealthCare Foundation, 15% of people would hold back medical information if the medical record system shared anonymous data with other organizations. An astonishing 33% of respondents were not certain, but would consider hiding information.
On a recent blog post at The Consumerist, this question was presented and brought in over 100 comments. As you can imagine, these comments varied from people expressing support for full disclosure and sharing of their medical information to those who convey great fear that their digital medical information could be used maliciously. This comment particularly struck me:
“What if you have a wrong or misdiagnosis which turns into a pre existing condition which in
turn [leads] to higher premiums. Or turns into a procedure that you did not need.”
This comment was so striking because it brings up an issue that contradicts the basic case for adopting EHRs: increased quality care and decreased healthcare costs. It also brings up ethical concerns and conflicts of interest between the use of medical information by healthcare delivery systems and insurance companies, as each are motivated by very different – and often conflicting- goals.
Patients/consumers are concerned they will be the people who are negatively affected in some way by this conflict between different parties or organizations that utilize medical information. To gain trust, I think the medical community must carefully and thoughtfully develop standards for how information is shared, and how much autonomy patients will have in deciding who has access to their medical information. If they do not include patients, fear will perpetuate and we will have more and more patients hiding health and medical information. This will certainly impede the success of making improvements in healthcare quality and cost reduction with widespread EHR adoption and medical information sharing.