Good News for Patients Hidden in Health IT Policy Committee’s Meaningful Use Stage 2 Recommendations

Deven McGraw, Project HealthDesign Regulatory and Assurance Advisory Group, Center for Democracy & Technology

Recently, the federal Health Information Technology Policy Committee sent its official recommendations on Meaningful Use Stage 2 to the Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare and Medicaid Services (CMS). In a bit of good news for patients and their advocates, these recommendations significantly increase requirements on providers and hospitals for sharing data electronically with patients.

For example, in Meaningful Use Stage 1:

• Providers and hospitals must provide patients electronic copies of their health information upon request and within three business days.*
• Hospitals must provide electronic copies of discharge instructions to patients upon request.*
• Providers must provide clinical summaries of each office visit to patients upon request, but these do not have to be in electronic format.*
• Providers have the option of providing at least 10% of their patients electronic access to their health information within four days of the information becoming available to the provider.  

For Stage 2, the Policy Committee’s recommendations place greater emphasis on providers and hospitals providing patients direct electronic access to their information. If the recommendations are accepted, patients will not have to request an electronic copy of their health information; they will instead have the capability to electronically view — and securely download on demand — relevant portions of their health information. This could significantly increase the demand for personal health records (PHRs) and applications that help individuals securely store, share and make use of their personal health information.

Specifically, in Meaningful Use Stage 2:

• Providers will be required to provide their patients access to view and download longitudinal health information within 24 hours of an encounter, or within four days of the provider having received the information from a lab or other external clinical site.**  
• Hospitals will be required to provide patients access to view and download information about a hospital admission within 36 hours of the encounter.**

Providers will still be required to provide patients clinical summaries of office visits, and hospitals will still be required to provide patients electronic copies of discharge instructions, but both will be able to use the view and download functionality described above to meet those objectives in Stage 2.

The Policy Committee also recommended that providers offer secure messaging to patients in Stage 2; at least 25 patients must be using this service in order for the provider to qualify for the Stage 2 payment. This is one of several instances in which the threshold is deliberately low in order to give providers time for implementation and to get patients accustomed to using the service.

The Policy Committee also adopted recommendations to deal with the privacy and security issues raised by the view and download functionality in Stage 2. For example, patients must be able to download information securely, and the information must include information on data provenance so that any subsequent users, including other providers, can know the data’s origin and the date it was created. Providers and hospitals also must establish processes to properly identify and authenticate patients who use view and download functionalities.

Additionally, in a move that’s sure to interest patients, the Policy Committee once again signaled its intent to include in Stage 3, which is scheduled to begin in 2015, requirements that deal with accepting electronic data from patients.

The Policy Committee’s Meaningful Use Stage 2 recommendations are not the final word on Stage 2. The final Meaningful Use criteria are set by CMS, and CMS’ proposed rule for Stage 2 likely will not be released until the end of the year. However, CMS relied significantly on the Policy Committee’s recommendations for Stage 1, so these recommendations are a strong signal of what’s to come in the very near future.

Do you see these recommendations as good news for patients and patient advocates? Tell us what you think by leaving a comment.

Read more posts about legal and policy issues.

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* Providers and/or hospitals must successfully execute these processes in response to at least 50% of patient requests in order to qualify for the Meaningful Use Stage 1 payment.

** Providers must provide this functionality to at least 10% of their patients in order to qualify for Meaningful Use Stage 2 payment.

Two Teams Share Insights About Personal Health Applications in JMIR

Libby Dowdall, Communications Coordinator, Project HealthDesign National Program Office

Kudos to two of our past project teams who recently published papers in the Journal of Medical Internet Research. The first paper, written by the Assisting Older Adults with Transitions of Care team from the University of Colorado at Denver and Health Sciences Center, takes a look at how personal health applications helped elders to self-manage medications. They found that personal health applications intended to help elders manage medications should:

• Provide links to reliable information on side effects, drug interactions and other medication-related concerns in a way that is clear, concise and easy to navigate;
• Facilitate communication between patients, doctors and pharmacists through electronic messaging and health information exchange; and
• Allow patients to selectively disclose medication information to different clinicians.

Co-authored by the Assisting Older Adults with Transitions of Care team and the My-Medi-Health team from Vanderbilt University Medical Center, the second paper provides a case report for developing two complementary personal health applications on a shared personal health record (PHR) platform. These teams built applications that catered to two very different user groups: My-Medi-Health assisted children with complex health needs, whereas Colorado Care Tablet aided elders with medication management as they transitioned from the hospital back to home environments. The insights and recommendations the teams share in this paper provide many take-aways for developing other types of personal health applications.

Read the papers:

• Older Adults with Multi-Morbidity: Medication Management Processes and Design Implications for Personal Health Applications
• Two Complementary Personal Medication Management Applications Developed on a Common Platform: Case Report

Selecting Observations of Daily Living (ODLs) – Patient and Provider Priorities

Kathleen Morrison, M.P.H., Crohnology.MD Project Co-Director, Health Communities Foundation

Crohn’s disease is a painful and often burdensome disease. Although debate is ongoing as to the exact cause of the disease, we do know that there is a genetic component, as well as an environmental component to the disease. We know that the disease is nearly nonexistent in Southeast Asia, but that when Southeast Asians move to the U.S., we start to see Crohn’s disease in that population. Jonathan Terdiman, M.D., our clinical principal investigator, describes the disease as “… a war going on between different types bacteria in the intestines of an individual.” The standard of treatment varies, depending on the severity and extent of the disease in the patient. For this reason, Crohn’s disease provides a perfect opportunity for patients and providers to explore the usefulness of observations of daily living (ODLs) in promoting increased collaboration and communication in the understanding and treatment of the disease.

We knew that in order to capture the ODLs that would be most useful for our project, we had to get input from both patients and providers. Prior to our focus groups with both of these groups, we reviewed the literature, taking into account the most often used of quality of life indices for Crohn’s disease – the Crohn’s Disease Activity Index and the Harvey-Bradshaw index. In addition, we reviewed the quality of life markers identified in the Inflammatory Bowel Disease Questionnaire (IBDQ). We selected a baseline set of ODLs based on the markers that had been identified as most useful and presented them (separately) to our patient and provider focus groups. We then asked them to rank the ODLs.

Although ODLs are patient-directed observations, we wanted to make sure that the providers felt that the ODL information being collected would help inform their treatment decisions. Our goal is to create an ODL collection system that is both personally relevant to patients and clinically useful for providers. Our budget allows us to identify and collect data on 6-10 standardized ODLs—including a few biometric measures such as weight and test results—and we were very curious about how much overlap there would be between the patient and provider focus groups.

Provider Priorities

Not surprisingly, there were both similarities and clear differences between the priorities of the representative focus groups. Both groups agreed upon the importance of pain, activity level, bowel movements (BM), medications, weight and test results. Yet the providers acknowledged that the level of ODL importance really does vary by patient. For example, although BM is an important indicator of Crohn’s severity, many different aspects of the disease can impact BM, including where the disease is impacting the colon, how far the disease has progressed and food intake. Because of the entirely subjective nature of this marker, the providers broadly felt that it would not be one of the most useful indicators to follow in this study. Similarly, they felt that energy level and mood were subjective measures that would vary by patient and that these ODLs would not necessarily assist the providers in their treatment decisions.

Patient Priorities

The patients preferred that the ODLs be very individualized. The women in the group wanted to track their menstrual cycles in order to see the correlation with pain and other indicators. This topic never came up in our discussion with providers. Several patients mentioned that missed workdays could be used as a proxy for pain, missed sleep or BM complications. The patients felt that energy level and mood were directly correlated with how sick they were and how motivated they were to exercise and work; they felt strongly that these indicators were related to their pain and disease symptoms. This group of patients was interested in investigating the interactions between two or more ODLs and the biometric measures, including medications taken. The patients had strong ideas about which ODLs they would track and why. In fact, some of them had already been tracking their symptoms for some time. Interestingly, the patients all commented that they would be more likely to collect ODL information when they were not feeling well. “When I feel good, I want to forget that I have Crohn’s disease, and I want to stay as far away as possible from it,” said one patient.

A Collaboration Between Patients and Providers

It took several weeks for our team to identify our final list of ODLs to be tracked.  We took into consideration factors identified in the literature; by the providers; and by the patients. Given the wide range of patient preferences about which ODLs to track, as well as Dr. Terdiman’s recommendation that the patients and providers should work together to identify the most relevant ODLs to track, it seems that a collaborative process is already in the works. In order to accommodate the ODLs that patients wish to track, but that are not on our official ODL list, our developers have introduced journaling functionality, whereby patients will be able to add and tag other ODL data that they deem important and relevant to follow. We hope that both patients and providers find the process of ODL identification and collection to be illuminating and rewarding.

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

Pairing Text Messaging with the BreathEasy Application

Robert Furberg, MBA, Ph.D., BreathEasy Text Messaging Pilot Lead, RTI International

In the past 10 years, there’s been a huge increase in the use of cell phones (particularly smartphones); social media, including Twitter, Facebook and blogs; networking tools; and information sharing systems, including mobile geolocation applications such as Foursquare. These tools may offer new opportunities for enhancing techniques and processes for collecting health data, including participant recruitment; tracing; maintaining contact with participants in longitudinal studies; cognitive interviewing; and passive data collection.

Text messaging is one of the most popular communication methods in the world. The pervasiveness, low cost and convenience of mobile phones make Short Message Service (SMS) texting an ideal tool for disseminating health information to—as well as gathering health information from—consumers. It’s also a direct and immediate route to reach people; I tend to think of it as the most intimate form of high-tech communication.

Despite these advantages, rigorous evaluations of new technologies in health services research applications have been rare. The few SMS interventions that have been well-studied suggest that text messaging systems can effectively increase medication and appointment adherence and sustain health promotion behaviors such as smoking cessation, diabetes, asthma management and depression.

I’ve been so enamored of texting and its potential over the past couple of years that I decided to build an SMS platform for sending and receiving messages for health behavior change interventions. After reflecting on these trends and considering how we can make the BreathEasy smartphone experience more engaging, we hit on the idea of integrating SMS notifications with the application.

So that’s where we are now: devising and testing methods to tie our SQL back end from the BreathEasy application side to the SMS platform in order to generate three kinds of messages. The first type of tailored reminder prompts participants to complete diary entries and/or provide peak flow readings; the second involves health alerts related to air quality, excessive use of rescue inhalers and peak flow readings; the third type of messages are health promotion messages that address general wellness and smoking cessation.

For BreathEasy, rather than focusing on text messaging as a mode of intervention or primary collection of observations of daily living (ODLs), we decided to try using SMS as an adjunctive technology. Our SMS-adjunct (SMS-a), is intended to support the collection of ODLs; SMS-a provides participants interactive, dynamically tailored compliance reminders via a smartphone application. Beyond serving as a technical and process proof of concept, we intend to evaluate the effect of SMS-a on increasing participant satisfaction, retention and data quality.

We’re eager to get started with ODL collection and even more excited to observe how things go with this integration. We’ll be sure to update you about our experience when we go live.

Learn more about BreathEasy.
Read more posts from the BreathEasy team.

Using Cell Phones to Improve the Health of Babies and Children Around the World

Karen Cheng, FitBaby Co-Principal Investigator, University of California, Irvine

One of the things I love about our project and the other Project Health Design projects is the creative use of cell phones to collect data and share health information. Cell phones have so much potential to expand access to health care for people who, for any number of reasons (e.g., lack of health insurance, distance to a health facility, unsure when it is appropriate to go see a doctor), might have limited access.

I recently learned of an organization operating in the West African country of Mali that uses some of the same methods we use in FitBaby. Like our project, Pesinet is committed to the early detection and prevention of illnesses among babies and young children. The similarities between our projects show the power of mobile technology to improve health for children around the world. The differences highlight the stark contrasts between our problems and needs here in the U.S. and the problems and needs in West Africa.

FitBaby focuses on infants who are highly at risk for long-term chronic illness because they were born pre-term. Pesinet works with infants and young children (up to age five, 20 percent of whom do not live to see their fifth birthdays) in Mali — almost all are high-risk because of the poverty and lack of health care in the country.

Both projects use cell phones to record health information about the children and then transmit the data via the cellular network to a central database, where health care professionals can access the data and review it for concerns. In the FitBaby project, we offer smartphones to parents so that they can record weight, diaper use, fussiness and other ODLs in the convenience of their homes. Parents can use the data to help determine if they should contact a health care provider about their baby’s health. A nurse case manager may also contact parents if she or he is concerned about the baby’s health indicators. Pesinet sends trained health care workers to families’ homes weekly to assess weight, diarrhea, fever, vomiting and cough (learn more). The health care workers use a cell phone to record data, transmit the data to a central health facility and receive feedback about whether the family should take the child in for further medical evaluation.

I find it thrilling that cell phones can be used in similar ways all around the world to serve the health needs of babies and young children. Best wishes to the folks at Pesinet! May your work be successful in improving the health of thousands of babies in Mali!

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