Giving consumers an eHealth voice

As the U.S. moves aggressively to drive the adoption of healthcare IT, the Agency for Healthcare Research and Quality commissioned a project to explore whether consumers felt that they should have “a role in determining how health IT is designed and used”.  The final report of this project can be found at:

Through a series of focus groups across the United States, consumers expressed the following views:

  • “… participants were optimistic that health IT would benefit health care quality. They thought that computers may add efficiency to health care and reduce medical errors, such as those associated with illegible handwriting.”
  • “…some participants were concerned that health IT might make providers more impersonal, devoting more attention to the computer screen and less to the patient.”
  • “Privacy and security were the main concerns of a large majority of the participants. A substantial proportion felt that health care consumers owned their data and needed a role in ensuring that those data were secure and used only in ways that they authorized. The participants were concerned that hackers or other individuals might gain inappropriate access to patient data. They were also concerned that their data might be shared with persons who want to use the data for their own purposes, rather than to provide care.”
  • “The participants did tend to support the idea that health care consumers should be asked for their consent before their medical data are stored electronically. Many participants felt that consumers should be able to elect to leave their data in paper format. The participants tended to feel that each individual provider should ask each patient for permission to store the patient’s data electronically and to share the data with other providers. Patients should be able grant permission to one provider but deny it to others, in the opinion of many in the focus groups. In this way, the participants felt that health IT restrictions should be set individually for each consumer, rather than by general rules applied to all consumers.”
  • “The participants were divided on the issue of how electronically stored data could be used for medical research and for market research by pharmaceutical companies.”
  • “…there was a great deal of disagreement about the role of government. Some felt that government should not concern itself with health IT at all, saying that market forces should guide those decisions. Others thought that elected officials and government agencies would protect the interests of health care consumers.”

Supporting a key theme that I have been harping on for the past few months, “… public education about health IT is needed. The education might address how health IT will affect the experiences of all health care consumers. It might also show the public how patients and consumers can have an influence on how health IT is designed, implemented and/or used.”  I think that such education is part of larger eHealth leadership issue, one that we (in Canada) are not addressing in the current climate of eHealth spending concerns.   While we are getting better at engaging the clinical community, we still have a long way to go in engaging a critical important constituency … the people to whom care is provided!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s