Implications for Patient Engagement if the Health Reform Law Falls

Robert Belfort, Project HealthDesign Regulatory and Assurance Advisory Group, Manatt, Phelps & Phillips, LLP

It is hard to escape the news coverage about the constitutional challenge to the Affordable Care Act (ACA), and the attention being paid to the case is understandable. The ACA is arguably the most far-reaching piece of domestic legislation that Congress has passed since it enacted Medicare in the 1960s. Although the focus of the legal challenge to the ACA is on the individual mandate, which requires that almost all Americans without health insurance buy individual health insurance policies or pay fines, there could be implications for patient engagement initiatives if the Supreme Court strikes down the law.

The Supreme Court heard oral arguments relating to the constitutionality of the ACA on March 26, 27 and 28. The Court’s decision is not expected until late June. The first issue confronting the Court is whether the individual mandate should be struck down because it represents an unconstitutional exercise of Congress’ power. If the Court does decide the mandate is unconstitutional, it will then consider what should happen to the ACA’s hundreds of other provisions. The answer depends on whether some or all of these provisions are deemed “severable,” meaning that they operate independently enough of the mandate to stand on their own even if the mandate falls.

The severability issue is a critical one. A number of the ACA’s payment and delivery reform provisions encourage patient engagement and care coordination, and, at least indirectly, could go a long way toward promoting the integration of patient-generated health information into care management and other health care delivery models.  These include provisions:

• establishing a Medicare hospital value-based purchasing program that pays hospitals based on performance against quality measures;
• requiring the development of similar value-based purchasing programs for other types of providers;
• gradually reducing Medicare payments that would otherwise be made to hospitals to account for preventable hospital readmissions; and
• establishing rules governing the formation and operation of Accountable Care Organizations (ACOs).

Each of these provisions attempts to reform the current health care payment system by rewarding health care providers for coordinating care and delivering better patient health outcomes – as opposed to rewarding them for the volume of services they provide. The ACO program, for example, creates financial incentives for providers to work together to treat patients across multiple care settings, including physician offices, hospitals, and in the home. An ACO consists of a group of providers that have agreed to collaborate to coordinate care for patients enrolled in Medicare Parts A and B. ACOs are intended to be patient-centered organizations, driven by the goal of delivering integrated, efficient and cost-effective care. ACOs that achieve quality targets and succeed in providing care at a cost less than what would otherwise be expected will share in savings with the Medicare program. To succeed, ACOs will likely have to find ways to better engage patients in their own health and health care. Incorporation of patient-generated health information, like observations of daily living (ODLs), could be one way of achieving this goal.

It is currently unclear whether the ACO program and other ACA payment reforms will continue to exist if the Supreme Court strikes down the entire ACA. Some have suggested that without the ACA’s payment reform provisions, health care providers will have less incentive to engage in innovative care coordination strategies, including those involving patient-generated health information. We will continue to follow the legal challenge to the ACA with great interest, and with an eye toward how it may affect the goals that Project HealthDesign supports. Please don’t hesitate to post any questions or comments about these issues below.

Read more posts about legal and policy issues.

Greetings from the Project HealthDesign Workshop

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Be sure to follow along today and tomorrow as we gather in Nashville for our final Project HealthDesign workshop. Facilitated by the Vanderbilt Center for Better Health, these workshops have been vital to helping our grantee teams collaborate successfully, as well as for helping us identify themes and ideas at a program level. However, this is a unique workshop — even for us — in that we’ve invited the inspiring members of our National Advisory Committee, as well as a small group of special guests, to help us carry Project HealthDesign's vision forward. We’re gearing up to dream together about how our vision and work might impact health and health care in the future.

The great news is that you can follow along during the workshop by plugging into the #phdworkshop hashtag on Twitter. Please join us!

The Second Time Around

Refining iN Touch for a Second Cohort

Holly Logan, M.A., iN Touch Project Coordinator, San Francisco State University

During the first cohort, we came across many challenges; some we had anticipated and others surprised us. These learnings allowed us to refine our design and conduct a second cohort. For the second cohort, each participant started out with health coaching only for two months, then received an iPod Touch, and coaching plus TheCarrot’s customized iN Touch application for two months. The refinements addressed the three major challenges faced by the first cohort: 1) Access to Wi-Fi, 2) Coaching protocol, and 3) Staying in contact with the participants.

Many participants told us that the number one reason they had problems with recording their ODLs was because they did not have Wi-Fi at home and did not know where to access it. Although we had installed a Free Wi-Fi Finder app on their iPods, it still seemed that the participants faced a major obstacle when it came to finding Wi-Fi to record their ODLs. To address this issue, we asked Mission High School for permission to give the participants the Wi-Fi password at school. They agreed, so during the iPod provisioning, we entered the password into each device and informed the participants that they could record their ODLs during lunch and after school. This has been working well for the new cohort.

The second challenge was the initial health coach protocol we had created, which detailed how the health coach should direct participants about what to record, when to record, etc. For the first cohort, we sent reminders to ask participants to record, but we didn’t have a set schedule of what we wanted them to do on a weekly basis. For the second cohort, we developed a Health Coach Guide that the health coach was to follow each week when meeting with the participants. This included setting goals, asking participants to record, checking in through text messages and updating the health coaching logs as well as measurements at each visit. This has helped keep the coach and participants better engaged through each step.

Finally, communicating with the patients and scheduling them to come down during school hours was an issue with the first cohort. We had been using a texting application called Text4Plus, but a lot of the participants were not getting our texts. We had no way to know if they had received our messages or not. For the second cohort, we updated all of the iPods by installing iMessage, and sent and received messages through that application. iMessage allowed us to verify whether a message had been delivered.  If it did not say ‘delivered,’ we knew to send it again until it was delivered. This has helped us stay in better contact with the second cohort, and we have been able to easily let them know when we have sent a pass for them to come see us during school hours.

We are now in the third month of the new cohort, and we may still face challenges in the next two months. However, we’ve had a lot of success with giving the participants the Wi-Fi password, following a detailed protocol and keeping in contact with them through iMessage.

Learn more about iN Touch.
Read posts from the iN Touch team.

Meaningful Use on the iPad and Beyond

Nikolai Kirienko, Chronology.MD Co-Project Director, UC, Berkeley

Tablet computing at the point of care is poised to touch virtually every corner of care delivery in medicine. Yet, the currently proposed criteria for Meaningful Use Stage 2 have yet to embrace the post-PC world of medicine that’s just over the horizon. Someday sooner than we think, those large, immobile boxes chained to a desk will seem as quaint a notion as the endless stacks of paper charts they replaced.

Thankfully, Project HealthDesign offers a practical glimpse of our rapidly emerging future in action today.

By equipping patients and providers with an array of cutting-edge consumer technologies-- from iPads to WiFi biometric devices-- and putting them through their paces in clinical practice, we are able to learn a vast amount about the promise and pitfalls we're likely to encounter at scale in just a few short years.

With respect to Meaningful Use, and through Project HealthDesign, Robert Wood Johnson Foundation is characteristically ahead of the game, pioneering a scenario that, at first glance, may look ridiculous to folks steeped in the world as it is today. iPads? SMS messaging? WiFi? I can't even get my patients to show up! (Note the Estrellita team's most popular app feature: appointment tracking.)

As a member of ONC’s newly minted Consumer/Patient Engagement Power Team, it's been a privilege to work with ONC's senior adviser for Consumer E-Health, Lygeia Riccardi and MaryJo Deering, acting director of the Office of Communications, to examine the long view in the context of Meaningful Use.

They recently asked fellow patient advocates Hugo Campos, Heidi Sitcov and me to work alongside industry leaders as co-chairs of a remarkable group assembled to combine a rare blend of on-the-ground experience implementing health IT. Our task: to bring the patient voice, via direct item by item comments, before the Policy and Standards Committees overseeing the development of the Meaningful Use Stage 2 criteria.

Thanks to Project HealthDesign, I have no shortage of vivid patient experiences involving the challenges of working with electronic health data, which I hope to more explicitly detail along with our specific comments in an upcoming post.

In short, Project HealthDesign makes abundantly clear that patients today-- and in rapidly growing numbers into the future-- will expect to easily engage with their personal health data in apps and on mobile devices of their choosing. Native apps on smartphones and tablets may provide the most engaging experiences available, but importing data, such as lab test results, remains a significant barrier to adoption-- for patients and developers alike.

The SMART Platform within ONC’s Strategic Health IT Advanced Research Projects (SHARP) is working hard to reduce many of these barriers.In conjunction with existing standards, it will facilitate the role outlined early on by the Project HealthDesign Common Platform and through complementary third party services like Microsoft HealthVault.

My highest hope is that data liberation for apps, as advanced in these and similar projects, will become a policy and standards reality in Meaningful Use Stage 3 and beyond.

It will be a beautiful day when sharing components of my longitudinal health record, such as medication adherence or lab test results, with an iPad app is as simple and easy as installing an app on Facebook.

Chronology.MD, in conjunction with other interactive health history timelines such as SMART app challenge winner MyNote, or @KatieMcCurdy's inspiring medical life history will require this data for greater accuracy and to spare patients from hand transcription.

The details of my experience directing and using our app have made me a vocal advocate for the robust inclusion of patient engagement as more than just a theme in a spreadsheet. To make a transformational difference, truly liberated data will need to be hard coded into the policies and standards driving value in our rapidly evolving electronic health care economy.

Granting static electronic views of data will be a welcome improvement, as written in the current Meaningful Use criteria. But if patients can't engage with their data in order to create meaningful change in their daily lives-- via apps they might actually enjoy-- then it’s but one more health information silo that used to be on paper.  When it’s all said and done, Meaningful Use must be meaningful for patients for it to be truly meaningful at all. Thankfully, this is only the beginning.

How would you enhance Meaningful Use to aid dynamic patient engagement? Sound off in the comments so I can share your input with the Power Team.

 

Our Participants’ Favorite Feature in the Mobile App: Appointments!

Karen G. Cheng, Estrellita Co-Principal Investigator, University of California, Irvine

When our team was first identifying the observations of daily living (ODLs) we were going to support in our app, we had a lot of discussions about whether to include appointments. They did not seem to fit into cleanly into the definition of ODLs. Yet, clinicians told us repeatedly that they needed to know if and when infants had attended appointments with other doctors. Missed appointments are a huge problem in this population, negatively impacting the care of the infant and adding extra cost to an already strained health care system.

We decided to go ahead and include this feature in the Estrellita app. All along the way, we questioned our decision, as it took much longer to build the appointments feature than we had anticipated. We also questioned how many times parents would actually track appointments, because we did not know for certain how many appointments the infants had.  

However, we have since found that tracking appointments is a very useful feature for the parents in our study – and one they often report as their favorite! In Estrellita, parents can pull a doctor’s contact information from the phone’s Contacts list (or manually enter it). They can choose the doctor’s specialty, record the time and date of the appointment, record any questions to ask the doctor, and easily enter a follow-up appointment. When an appointment is coming up, parents receive reminders starting two days before the appointment. After the appointment time has passed, an automated Estrellita message asks parents whether they attended the appointment; if they did not attend the appointment, the app encourages them to reschedule the appointment. A Past Appointments tab allows parents to quickly glance at a list of previous appointments

Through the clinician web interface, the EDAC case manager can see monthly calendars for each baby. Icons are used to indicate when appointments are scheduled and whether the parent and infant attended or missed the appointment. Because of these data, there have been several cases in which the case manager was able to follow up with parents to ensure that the missed appointment was rescheduled.

When I look at the monthly calendars, I am just stunned at the number of appointments these infants have. Many of the infants in our study have four or five appointments per month. Some have as many as three per week!  Rarely are the specialists in the same office.  And so, these sleep-deprived parents have to manage not only the dates and times of the appointments, but also the locations – amidst other family obligations, work commitments, etc. It’s no surprise that parents miss appointments! 

Our hope, then, is that Estrellita has been able to help parents reduce the number of missed appointments – either by reminding them of the time and location of appointments or by encouraging them to reschedule. Preliminary analysis of interview data supports this goal, and we hope to see more evidence of it as the study continues.

Learn more about the Estrellita project.
Read more posts from the Estrellita team.

The Challenges of Liberating and Aggregating Data for Optimal Patient-Provider Collaboration and Outcomes

Dan Bernstein, M.Arch., Chronology.MD Technical Partner, Medic8 Manager

Before a team of clinicians can develop and deploy a good treatment plan, they need the best available information in order to correctly and quickly diagnose a patient’s condition and status. 

In the past, many people saw the same doctor for most of their lives.  At the time, paper records were the best option we had; that’s not the case anymore.  Now, patients move and travel, see multitudes of health care professionals throughout their lives, and use several pharmacies and labs. Today, although electronic health records can make patient health data portable, information liquidity is not happening.

Almost every use case in health care should have the patient at its center. But most of the diagrams I’ve seen that illustrate how information flows in health care show patients as a byproduct, as an afterthought, or don’t even document their existence.

Today’s EHRs are not leveraging the power of intelligent data management. In fact, they are used in much the same way as paper records have been used traditionally.

This reminds me of my time as an architect. Even though most firms had begun using what were then considered state-of-the-art CAD systems, I soon realized that moving to digitized systems hadn’t magically allowed them to work smarter (e.g., they hadn’t created symbol libraries of common building elements or building systems broken out into individual files for re-use and global updates). That was 20 years ago. Ad while architecture firms and CAD systems have evolved, health care and EHR systems seem to have been dragging their feet.

Organizations need to jump feet first into the patient-centered digital realm. Today, supporting both paper and digital systems is inefficient. 

It’s a travesty that in a modern society patient health records are stashed away and only made available to the patient or a physician at another hospital through a process that hasn’t changed since the early part of the last century.  Here is what I experienced in my recent interaction with University of Chicago Hospital when trying to get my own health records:

• The hospital mails me blank forms to document my approval to release my records. These forms are not available to be faxed or emailed or on their website for download.
• There are charges for me to get a copy of my records.
• Even though the University of Chicago Hospital uses an Epic EHR system, I can’t access my own information via an online patient portal.
• I have records at three different hospitals that all use Epic EHR systems, but it's not easy to share my health information between the systems.

It’s a backward system that requires a patient to jump through hoops to request information from his providers, hospitals, labs and pharmacies. Any organization that impedes the appropriate transfer or sharing of patient health information should be penalized.

If the best available information is to become available to both patients and providers at the point and time of care, then it’s going to require lots of changes and all of our support.

Learn more about the Crohnology.MD project.
Read more posts from the Crohnology.MD team.

Reaching Out to Physicians

Matthew Lee, dwellSense Lead Researcher, Ph.D. Student in Human-Computer Interaction, Carnegie Mellon University

As mentioned in our previous blog post, each of our study participants has a different set of clinicians who provide care for them. At our request, our participants took out their address books to look up their doctor's information and shared it with us. Now we had the daunting task of trying to convince time-strapped physicians to spend 30-60 minutes with us to review the patient-generated data from the dwellSense system.

Our recruitment approach began with sending a letter to the physicians' offices that described the study, said it involved one of their patients, and emphasized how valuable their contributions would be to our study. We didn't hesitate to use whatever persuasive strategies we could think of, including name-dropping and some gentle groveling. We made sure to mention that the research was funded by the Robert Wood Johnson Foundation, a name that undoubtedly carried a lot of weight with clinicians. We also used the fact that I’m a student who’s working on completing my Ph.D. dissertation. The letter asked not only for the clinician to agree to an interview session to support the cause of the study, but also to support my Ph.D. dissertation. People often are willing to help students with their work in ways that they might not help a corporation or something a little less faceless. Fortunately, I didn't mind casting myself in the role of a struggling graduate student for the sake of science. 

After we sent these letters to the clinicians’ offices, we waited. Fortunately, because many of the physicians were also part of the University of Pittsburgh Medical Center, we were able to find their email addresses on the University of Pittsburgh website and send the letter to them via email. To our surprise, we received responses from four of the primary care physicians we targeted within a week of sending the letter and/or email.

For those we didn't hear back from, we followed up with a phone call. Some offices received the letter, but other offices reported that the letters were lost in the sea of paperwork that flows in and out of the office. Many asked to have the letter sent again by fax, a 1980s-era technology apparently still widely used in doctors’ offices. After faxing the letters, we followed up with the offices to make sure they received them and got on the radar of the physician. We found that the front office staffs are usually quite accommodating of our requests to make sure the letters (and presumably other paperwork) get into the hands of the physicians. 

Thus far, we have been able to interview five physicians, and we still have approximately seven physicians to follow up with to see if they would like to participate. Overall, we were delighted with the responses we have received so far. As we reflect on the reason for our success, we have come to find that certain physicians were really interested in the idea of patient-generated data, in particular, medication taking, and how it could provide a window in the everyday functioning of one their patients (with multiple chronic conditions). We also think that leveraging the fact that it is part of a Ph.D. dissertation and giving busy physicians a chance to help a student was another reason they were willing to make time for us.  Stay tuned for a follow up post about some of the interesting findings from our interviews with physicians. 

Learn more about the dwellSense project.
Read more posts from the dwellSense team.