Consumer access to electronic health records may not be far off. In the not-so-distant future people will look up their file from home or a mobile device. They will also be able to add comments to their doctor’s notes.
The Australian PCEHR allows limited access, but the US OpenNotes record system has gone a step further by inviting consumers to read all the doctor’s consultation notes.
Pulse+IT magazine reported that 18 percent of Australian doctors believes consumers should be able access their notes; 65 percent would prefer limited access and 16 percent is opposed to any access at all.
What are the pros and cons? Here is my take:
- Improved participation and responsibility
- Increased consumer’s knowledge of their health care plan
- Better self-management
- Consumers can read their notes before and after a consultation as reminder
- Consumers can help health practitioners to improve the quality of the data, eg by adding comments
- Consumers can better assist practitioners in making fully informed decisions
- Consumers may interpret the data incorrectly creating unnecessary concerns
- Increased risk of security breaches and unauthorised access
- Unwanted secondary use of the data by eg insurance companies or governmental organisations
- (Parts of) the records may end up in undesired places like social media
- Practitioners may need to change the way they write their notes
- Increased medico-legal risks and potential for errors occurs if data can be altered, removed or hidden by consumers
- Increased workload
An article in the New England Journal of Medicine reported that OpenNotes participants felt they had a better recall and understanding of their care plans. They also felt more in control. The majority of consumers taking medications reported better adherence. Interestingly, about half of the participants wanted to add comments to their doctor’s notes too.
Most of the fears of clinicians were, although understandable, ungrounded:
- The majority of participants was not concerned or worried after reading what their doctors had written (many just googled medical terms and abbreviations)
- Consumers did not contact their doctors more often
- A minority of doctors thought OpenNotes took more time, others thought it was time-saving
According to the OpenNotes team transparent communication results in less lawsuits. I couldn’t find any information about the security risks of the system.
Overall, consumers were content: 99% percent preferred OpenNotes to continue after the first year. Doctors were positive too, see this video:
Push and pull factors
Consumers have the right to know what information is held about them, and they have the right to get access to their health records. Online access therefore seems to be a logical step to exercise these rights. Although the PCEHR allows consumers to see a summary, the consultation notes cannot be viewed. OpenNotes is about sharing all consultation (progress) notes between a consumer and his/her practitioner.
I believe there are 3 trends happening that will push this development:
- The culture of sharing data online
- The increasing consumer participation in health care
- Evolving digital and mobile technologies
The 3 main reasons why it will not happen overnight:
- An attitude change towards full access takes time
- Security and privacy concerns
- Lack of incentives for software developers and practitioners
Improving transparency in healthcare
Online access to electronic records (viewing and commenting) will boost transparency. It will change the interaction between consumers and practitioners and may even improve quality of care. I’d love to see more trials and experiments in this area. What do you think?