Monday, April 16, 2012

Promoting Patient Engagement in Meaningful Use

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 OsitDavid HarlowAdrian GropperFred 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 patient's their damn data! What other ways do you think we can  strengthen patient engagement in meaningful use?

8 comments:

  1. The way to promote patient engagement is to invoke advocacy and market forces. ONC can do that by strengthening the patient access regulations to include OAuth, BlueButton and by eliminating the delay to full information availability. This means an updated BlueButton file and patient agent access via OAuth secured links as soon as the info hits the MU2 Certified EHR.

    To your point that some providers will drop out of the EHR program, I say: "bring it on". As we move toward quality transparency and payment reform, providers will adopt internal EHR for sound economic reasons regardless of the incentives. The EHR incentives must focus on patient engagement and transparency.

    It's time to stop the standoff and arm the patients with the power to engage advocates and delegate access. We should not use the benchmark of today's insipid patient portals as an excuse for watering down Stage 2.

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    1. @Adrian I absolutely agree on BlueButton and OAuth as well as the new business model which will emerge to promote patient engagement. However, I still think there are some changes that need to be made to the proposed rule around the 10% requirements...

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  2. It will be hard to get patients to download their data if it's just a repeat of what the staff already told them in the office (test results, medications to take) but I could see a couple immediate uses for the downloads: family caretakers who couldn't be present at the examination, and people who want to bring information to a referral when the original doctor isn't hooked up to the specialist yet. More long term, we have to install systems that upload patient data so the patient is really part of the caretaker team.

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    1. Another 'immediate use' category -- not hypothetical -- is that where there are third party medical and other case managers involved in case. Today as in so much of this area there's tension between information usability and privacy (or privacy is used as a reason to under-share needed information with this class of authorized managers). My bottom-line comment here is that those struggling (HIV/AIDS, other disability) are also asked to be the (inappropriate) provider/case manager go-between in routine as well as extraordinary situations.

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  3. @Brian Thanks for your focus here on patient engagement and your take on critical aspects. Fascinated with your folding in the March 2011 Institute of Medicine report; I highlighted it then for a key health body here in Connecticut but saw little comment. Mine to you is: glad you focus on this as part of what a 'very high bar' might be. At the same time, there's decades of work, now, showing why it is that lesbian, gay, bisexual and transgender medical issues tell us that physicians who don't know -- and don't know 'how to know' -- this information ill serve patients, researchers, public health policymakers and funders. So, sure, another burden, and thus maybe a good surrogate for other similar 'difficult' data sets. Struggle with this data set, and learn that beyond LGBT patients themselves.

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  4. Brian - Thanks for taking up this topic as it's vitally important. I don't doubt that the proposed requirements will be difficult for some but I hope we aren't, once again, beset by the tyranny of low expectations. 10% is a strikingly low # when you consider that health items are the 3rd most searched items across the entire population (not just sick people who should be much more motivated on a relative basis). While we know that *some* people are difficult to engage, it's a llllonggggg way from 90%.

    It's only difficult (today) because the incentive systems have created a dynamic where providers have become highly skilled at getting as big a bill out as fast as possible. Why wouldn't they have developed that skill? That is exactly what the flawed "do more, bill more" model of reimbursement has rewarded. The byproduct is they haven't honed their skills at engaging patients. Having worked with hundreds of providers and dozens of vendors, these are smart and motivated people. I have ZERO doubt that they will rise to the expectations if they are given the chance.

    If there is any difficulty coming up with ideas on how to far surpass the 10% threshold, I'm certain that groups like StartUp Health. Rock Health, HealthBox and Blueprint Health would convene in a heartbeat to come up with 100's of ideas on how to exceed the low 10% threshold. If ever this country needed a "moonshot" it would be now when families, businesses and governments are getting bankrupted by healthcare costs. I can't think of too many things that have a greater impact on outcomes (and reducing costs, btw) than productively increasing patient engagement.

    Cue The Six Million Dollar Man music :) "Gentlemen (& women), we can rebuild the healthcare system. We have the technology. We have the capability to build the world's best patient engagement systems. Stage 2 Meaningful Use will be the driver. Better than it was before. Better, stronger, faster." [Sorry for the 70's flashback - too little sleep last night.]

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  6. Brian - Great post. Thank you! I'm a little ambivalent on the 10% download, view, etc. proposal. On the one hand I see where the government is headed and agree it's the right direction. On the other hand I agree that holding providers accountable for patient behavior is tough. It's important to point out that we've already experienced some of this with Quality measures. One of the many drivers of cases management in practices today is based on Quality measures which impose minimum performance of patient behavior. I recall the pushback there, but as the government forged ahead providers somehow figured out how to make it work. It would seem the government is giving providers a great deal of credit for the degree of influence they have over their patients' behavior. While I tend toward the side of 'too much too soon' on this one, if CMS does require it, I agree with what Dave has alluded to in that the industry will somehow find a way to make it happen. It may not be pretty at first, but five years from now it will blend into the landscape as just another aspect of the standard care we provide. Thank you, as always, for good thought-provoking insights!

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