The proposed rule for Stage 2 Meaningful Use has a strong emphasis on patient engagement. This is certainly a good thing, and I am very glad to see the focus put on this area. As the online petition urging the ONC even further strengthen these requirements says, "Nothing would result in improving the health of the population (and decrease healthcare costs) more than having greater involvement/engagement by individuals in the healthcare process." I've signed the petition, and while the best way to have an impact is to actually submit comments on regulations.gov, this is a good way to show some critical mass on the issue. However, simply saying that it's important to strengthen the Patient Engagement requirements of Stage 2 Meaningful Use does not provide any specific guidance on what the good, the bad, and the ugly is in the proposed rule. There is a great opportunity that Nate Osit, David Harlow, Adrian Gropper, Fred Trotter, and others from the Society for Participatory Medicine have made available to provide feedback and crowd source some comments using this form.

Some of the objectives revolving around patient engagement are:

• Use secure messaging to communicate with patients on relevant health information
• Use Certified EHR Technology to identify patient-specific education resources and provide those resources to the patient
• Provide patients the ability to view online, download, and transmit their health information within 4 business days of the information being available 
• Use clinically relevant information to identify patients who should receive reminders for preventative/follow-up care
• Provide clinical summaries for patients for each office visit
• Record whether a patient 65 years old or older has an advance directive

While these are laudable goals and many are achievable, the devil is in the details, and some of the measures providers will need to meet for these objectives deserve some additional consideration. For example, I'm very happy to see Direct protocols for secure messaging included in Stage 2 Meaningful Use (John Moehrke has done a great job of outlining this aspect of the rule), but the requirement that a secure message was sent using the electronic messaging function of Certified EHR Technology by more than 10 percent of unique patients seen during the EHR reporting period could be difficult for some providers to reach. It is one thing to require the providers to use secure messaging themselves but how will they ensure that patients send messages? One enterprising idea I've heard is to offer to enter patients into a raffle to win an iPad for sending a message, but this really doesn't get us closer to our goals of having patients more involved in their care. Requiring providers to communicate with each other, and requiring the capability for patients to use this functionality is important, but it will be difficult for physicians to force 10 percent of their patients to send a message.

Likewise, it is very important that providers give patients the ability to view, download or transmit their own health information. But requiring that more than 10 percent of all unique patients seen by the EP during the EHR reporting period (or their authorized representatives) view, download, or transmit to a third party their health information is again going to be a challenge for many providers. Whether the patients access their data and what they do with it is beyond the providers control. Only requiring that 50 percent of the unique patients are provided that data seems weak - I believe every patient should have full access to their own medical record - and the 10 percent rule could be a real problem in some cases. I would prefer to see the requirement reworked to report the number of patients who access and transmit their data, and patients who send secure messages. This is an important indicator that like quality measures should be captured, but making the bar too high could have the unintended effect of driving providers away form the program, which will not help achieve the goals of greater patient engagement.

Dave Chase recently wrote in TechCrunch that "providers and legacy vendors are pushing back against the requirements proposed by the ONC" and "there is a major risk that the proposed requirements will be watered down based upon this feedback." This is true, and I would be sad to see less emphasis placed on patient engagement, and actually don't think it will happen. The ONC has formed a Consumer/Patient Engagement Power Team which will assess Standards and Certification Criteria NPRM and provide recommendations for strengthening consumer/patient engagement components. I feel confident that this group will find some good opportunities to keep this critical area at the forefront. But I also think there needs to be a thoughtful approach to how best to promote patient engagement without discouraging providers to participate in the program.

The proposed rule also asks for comments on whether the recording of disability status; and of gender identity and/or sexual orientation should be added. While disability status might be achievable, it would be very difficult for providers to begin asking the sexual preference of their patients. The proposed rule states:

We encourage public comment on the burden and ability of including disability status for patients as part of the data collection for this objective. We believe that the recording of disability status for certain patients can improve care coordination, and so we are considering making the recording of disability status an option for providers. We seek comment on the burden incorporating such an option would impose on EHR vendors, as well as the burden that collection of this data might impose on EPs, eligible hospitals, and CAHs. In addition, we request public comment on—(1) how to define the concept “disability status” in this context; and (2) whether the option to collect disability status for patients should be captured under the objective to record demographics, or if another objective would be more appropriate.Show citation box We also seek comment on whether, we should also include the recording of gender identity and/or sexual orientation. We encourage commenters to identify the benefits of inclusion and the applicability across providers.

According to a report from the Institute of Medicine in March 2011 collecting data on sexual orientation and gender identity through electronic health records could help address health issues among lesbian, gay, bisexual and transgender populations. The IOM report also recommended that the requirement be included for the collection of such data in objectives for meeting meaningful use rules. However, the researchers also said this more sensitive information could be difficult to obtain. No kidding... The stage 1 requirement to record demographic information, such as date of birth, sex, and race, and ethnicity as structured data for more than 50% of patients seen has been sometimes challenging already. The capture of ethnicity was a new concept for many providers and there were many questions of clinical relevance, but the reason to capture this data was to identify disparities. Now the threshold for recording demographic data goes up to more than 80% of patients in stage 2 and adding in additional components to identify disparities would make this a very high bar.

Asish Jha, MD wrote in the Health Affairs blog that "federal policymakers are trying to move the provider community from the ‘ability’ to do things electronically to actually demonstrating that they are doing it. While this is a laudable move, I suspect that many providers are going to push back. It is not clear that 10 percent of patients will want to view, download or transmit their data to others. It is hard to imagine that we are going to punish providers when their patients choose not to look at their own data." So where does this leave us with strengthening the patient engagement components of meaningful use? I think we should just go for it: Every patient should have electronic access to their health data. Instead of only 50 percent having their data available let's acknowledge that patient's have the right to their own health data and then require providers to monitor and report on patient access. And I urge everyone involved in healthcare to sign the ONC's Consumer Pledge. It is time to give patients their damn data! What other ways do you think we can strengthen patient engagement in meaningful use?

Brian Ahier works as Health IT Evangelist for Information Systems at Mid-Columbia Medical Center. He is a City Councilor in The Dalles, Oregon and also serves on the Board of Mid-Columbia Council of Government, and Q-Life, an intergovernmental agency providing broadband capacity to the area. He blogs regularly at Healthcare Technology & Government 2.0.