Hematology on the Move: How Are Mobile Health Apps Helping Patients?

To say that health-related mobile apps are trending would be an understatement. Google the term “health-care apps” and more than 71 million results come rocketing back. More and more people are relying on devices to count their steps, track their activity levels, keep an eagle-eye on their calorie count, or even figure out what caused that itchy rash on their leg.

By the same token, more patients with acute and chronic diseases are turning to mobile apps to learn about their condition or monitor their symptoms and treatment. Mobile health market trends have estimated that 500 million smartphone users worldwide, including health-care professionals and patients, will use some sort of health-care app by the end of 20151 and that, by 2018, the number of users could rise to more than 3.4 billion.2

Mobile health apps have proven popular with consumers, and physicians are beginning to integrate them into their practices as another tool to enhance patient-physician communication.

The purported benefits of medical mobile apps include easy accessibility to information and the fact that these apps offer another way for health-care practitioners to be in touch with patients after the office visit is over. But what are the drawbacks associated with the booming mobile health app market? And, even if patients are initially gung ho about downloading apps, are they using them with as much enthusiasm over time?

ASH Clinical News spoke with mobile health app experts for an overview of the market, and to learn how it will need to grow and adapt to meet patient needs.

Who Really Uses Apps?

Paul Krebs, PhD, an assistant professor in the Department of Population Health and a member of the New York University Cancer Institute’s Epidemiology & Cancer Control Research Program, as well as a clinical psychologist at the VA New York Harbor Healthcare System, may have some answers about the demographics of health-care mobile app users.

Dr. Krebs and a colleague conducted a cross-sectional survey of 1,604 smartphone users in the United States that examined health-care mobile app use, finding that most people are interested in fitness- and nutrition-focused apps. The survey consisted of 36 items that assessed respondents’ sociodemographic characteristics, history, and reasons for health mobile app use or non-use, perceived effectiveness of health apps, reasons for stopping use, and general health status.3

Results were published in the Journal of Medical Internet Research (JMIR). Slightly more than half (58.23%) of respondents had downloaded a health-related mobile app on their smartphones. Among this cohort, fitness and nutrition applications were the most commonly accessed, with most respondents reporting that they used these on a daily basis.

“Individuals more likely to use health apps tended to be younger, have higher incomes, be more educated, be Latino/Hispanic, and have a body mass index in the obese range (all p<0.05),” the authors wrote.

For the 42 percent of respondents who did not download a health-care mobile app, most expressed a lack of interest in these types of apps, a concern about the apps collecting their personal data, and cost.

Of note, according to the authors, was the widespread belief among users that they should “get something for nothing,” as most respondents indicated they would not pay anything for a health app. Payment was not equated with security, however, as users’ trust in the accuracy and data safety of apps was generally high among all respondents.

So, once physicians and developers have a better idea of who the audience for health apps is, what can they do with that information? For one, it can aid in targeting mobile health-care apps to a specific community.

Interestingly, the racial demographic that reported the highest use of health-care apps were Latino/Hispanic respondents. Dr. Krebs pointed out that other research has shown a higher use of smartphones in minority communities, which is most likely related to access to these Internet-based tools.4

“A person can get Internet service at home for approximately $60, or that person can get phone and Internet service on a smartphone for about the same price,” he noted. “Smartphones have been the cross-cutting way that more people have access to the Internet; it’s leveled the playing field for access.”

Get SMART: A Case Study

The Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART) application was initially developed to help patients with sickle cell disease (SCD) maintain medication adherence, and was later expanded to include information about symptoms and interventions.

The app was inspired by two turns of event, according to its designers Nirmish Shah, MD, assistant professor of medicine and assistant professor in pediatrics at Duke University Medical Center in Durham, North Carolina, and Jude Jonassaint, RN, research nurse at the University of Pittsburgh Medical Center Adult SCD Program (Mr. Jonassaint was at Duke when SMART was developed).

First, a health-care philanthropy group issued a request for application (RFA), and second, an SCD patient pled for something to help manage his pain, as Dr. Shah told ASH Clinical News.

“The ability to see what symptoms are occurring and what interventions are being used allows us to better understand pain, response to medications, and other issues,” he said.

In addition to allowing patients to record symptoms and interventions, the SMART app, currently available only through a clinical trial, provides bi-directional communication between patient and provider, and includes algorithms for care, according to Dr. Shah. Early experiences with the app have been successful, showing that the app could potentially be used in managing and treating other diseases, both in and outside the hematology/oncology realm of its development.

In one study, Dr. Shah and colleagues determined patients’ receptiveness and willingness to use the app, along with its usability and utility.5

In the first phase of the study, 100 patients (47 females and 53 males) were recruited, 95 percent of whom had SCD. Demographics were reflective of the population typically seen in an outpatient clinic, with 40 percent ranging in age from 18 to 34 years, 35 percent 35 to 50 years old, and 25 percent >50 years old. In addition, 84 percent reported owning a computer device (such as desktop or tablet), while 94 percent reported having a mobile phone.

“The older age group reported lower mean comfort levels with texting (p<0.001) and using social network (p=0.01) than did the two younger groups,” the researchers noted. They also found the older patients had lower comfort levels with using computers (p=0.02) and smartphones (p=0.003) to communicate with health-care providers than did the younger patients.

Education level also played a role in patients’ comfort level with communicating via computer with their health-care providers. Fifty-four percent of those who attended college reported a willingness to use this medium to communicate, while only 46 percent of those with a high school or lower education expressed comfort with the technology (p=0.01).

Gender was not associated with differences in mean comfort level.

In the second phase of the study, 17 patients with SCD who were not enrolled in the first phase tested the SMART app (only Apple devices were included in the study) for the ease with which they were able to record their symptoms and log their medication use.

Patients engaged with the application for a median of 15 minutes per day and reported that it was easy to use (median score = 10 [on a scale of 0-10]; range = 5-10), useful to track pain (median score = 10; range = 5-10), and useful to help communicate with providers (median = 9; range = 8-10).

The researchers observed that the ability to log, track, and communicate with their medical providers in a timely manner offered patients an additional method to take control of their disease. “The smartphones’ push notifications prompt patients to input their data and remind them to carry out planned treatments that may have a significant impact on compliance,” the researchers wrote. “This app has the potential to decrease health-care utilization and hospitalizations, as well as increase communication with providers.”

Mr. Jonassaint told ASH Clinical News that since the study was published, patients have been very receptive to the SMART app, particularly the ability to share information with their health-care providers.

“Mobile technology helps us partner with patients in the context of their daily lives with bi-directional communication capabilities, and the ability to collect both active and passive meaningful data in real time at any time,” he noted.

He and Dr. Shah have been working on expanding the capabilities of the application for SCD patients with additional functionalities (such as videoconferencing, interaction with wearable monitors, and mood and stress tracking), using the data from the app to build models to predict pain events and outcome, and adapting the software for use in pediatric SCD and other disease states.

“We feel that the addition of wearable activity trackers will be instrumental in helping the provider team since it will provide passively acquired objective data to put with the subjective symptoms,” Dr. Shah commented. “I do think that as cost and access to this technology becomes mainstream, it will be a significant help in providing information about patients.”

Since its inception, Dr. Shah said the SMART app study has been expanded to multiple centers, with app-derived data streamed to HIPAA-compliant servers. He is also recruiting for other trials that focus on the value of mobile apps for improving outcomes and patient compliance,6,7 and his team has begun work to use the app for any chronic disease with pain, oncology patients with pain or nausea, and bone marrow transplant patients.

Based on his experiences with the SMART app, Dr. Shah said he believes health-care providers should set a goal of incorporating mobile app technology to aid in patient care. “The reality is that patients have issues that are not well reported and patients do not always seek prompt medical help when needed,” he said. “The hope is that this type of app will help.”

Mobile app technology is not a cure-all for patient non-compliance and non-adherence, though, and it is not without its downsides. “There is a fear that this would further distance the patient from the provider team and there is a fear of managing the disease remotely. People might ask, ‘Why do I need to see the doctor when I have an app and can talk through the app?’” Dr. Shah said. “Both are valid concerns, but I think that provider teams will see the ability apps provide to have more information and access to improving patient care as a strength of mobile technology and work toward solutions that overcome these fears.”

Mr. Jonassaint said he agreed that there is great potential for patient-centered mobile health-care apps, with important caveats. “I envision that we will only be limited by the type of sensors that we could use in the future to diagnose, predict, or curtail adverse events,” he said. “However, we must foster partnerships and relationships with people and not technology, as it is only a complementary tool. We cannot replace meaningful therapeutic relationships.”

How Mobile Are Hem/Onc Apps?

Dr. Krebs and his team are analyzing data for health-care mobile app use in people with self-reported chronic health conditions, such as cancer (not limited to hematologic malignancies).

They expect to publish the findings of this analysis later this year, but Dr. Krebs said the JMIR study may offer some clues into the use of apps among self-reported overweight respondents.

“What we did find is that there was a linear trend for health-care app use with obesity,” Dr. Krebs noted. “People are really looking toward apps as the next ‘fix’ for that one condition.”

There are some notable mobile apps for patients with lymphoma, aplastic anemia, and myelodysplastic syndromes (MDS). The Lymphoma Research Foundation, for instance, has a free “Focus On Lymphoma” mobile app that provides patients and caregivers content based on their lymphoma subtype and tools to help manage their diagnosis and treatment.8

Also, the Aplastic Anemia & MDS International Foundation (AA&MDSIF) offers their free “Treatment Tracking Tools” app that enables patients and caregivers to track medication, therapy reaction, and treatment progress.9

Both these applications are available for download via the Google Play Store and the Apple Store.

There are also plenty of health-care apps that physicians who treat hematologic disorders and malignancies may find helpful, according to Susan Doyle-Lindrud, DNP, director of the Doctor of Nursing Practice Program and Oncology Program in the School of Nursing at Columbia University in New York.

“Mobile apps have allowed health-care professionals to obtain information from smartphones instantly during patient encounters,” she said. “Access to drug dosing, drug interactions, body surface area calculations, and criteria for grading adverse events has improved efficiency in the clinical setting.”

The main selling point of these apps is that they are offered by professional organizations that peer review and update content on a periodic basis, Dr. Doyle-Lindrud explained. She noted that they are also used by cancer physicians as reliable resources for treatment information.

And, though there are oncology-specific mobile apps that she recommends, such as medication reminder tools or educational materials from patient-centered websites run by medical societies, uptake among patients is slower.

Dr. Krebs sees potential for hematology/oncology apps that can truly make a difference in patients’ everyday lives. “I think apps could be used to educate patients, especially when they receive an initial diagnosis – that moment when patients say, ‘I have cancer. What now? What happens in the future?’” he said.

He is currently working on, and seeking funding for, an app to measure appropriate levels of physical activity in cancer survivors. His rationale is that “cancer patients feel that they need a specialized app. They don’t want to use something like My Fitness Pal [a calorie-counting, activity-tracking app for the general population] because they are afraid they might hurt themselves.”

The Sticking Point

While people may freely report that they downloaded health apps, the number of downloads doesn’t necessarily reflect evidence of use. If mobile health apps are exploding, then why aren’t they on the home screen of everyone’s smartphones or tablets and why aren’t they being actively used?

In a survey of available health-care mobile apps, the IMS Institute for Healthcare Informatics pinpointed one reason why: A mere 36 applications account for nearly half of all health-care mobile app downloads, out of more than 165,000 available apps.10

Dr. Krebs cited another roadblock to adoption: the burden of data entry on the user. Most health apps need the user to input data about their activities; for example, weight management tools require people to enter the foods they eat, what time of day they are eating, portion size, daily weight, and so on. The JMIR study found that about half of health-care app users (45.7%) stopped using them specifically because of the high data entry burden, loss of interest, and hidden costs.

“The biggest concern that people have applies to nutrition and activity behavior, as well as other kinds of behaviors like medical adherence,” he said. “However, when the user has to enter data, engagement with the app lasts maybe three days.”

While the recent popularity of wearable sensors (i.e., the FitBit or the Apple Watch) has improved activity-tracking (as data are passively collected), attempts to automate medication adherence, such as through the use of automatic monitoring of pill bottles via Medication Event Monitoring System (MEMS) caps (which record the number of bottle openings and the date and time of bottle openings) has often been stymied by users.

“We have performed adherence tests where we give patients fancy bottles with fancy MEMS caps. Patients would promptly dump all the pills out of the bottles and organize them into their own seven-day pillboxes,” Dr. Krebs said. “There goes the study.”

This is further complicated by the few people who take just one medication, he added.

Another problem is the lack of engaging information. As Dr. Krebs noted, ideally, an app is interactive. Unlike a news content or social media site, which are constantly updated, health-care apps tend to be static. “You can’t just send someone to a website,” he said, adding that many apps merely dole out information. “These are not based on good behavioral principles of keeping people engaged. That’s going to require novelty and connection with other people. There has to be something that piques users’ curiosity to open the app.”

And that leads to the concept of “stickiness,” i.e., luring users back to the app over and over with the promise of new and different information.

“For instance, I open my New York Times app all the time because it is constantly changing, or Facebook, which is also constantly updating,” Dr. Krebs added. “Until we can figure out how to make health-care apps that are sticky like that, I don’t think they are going to be used frequently.”

But Dr. Shah argued that patients don’t necessarily have to use an app all the time for it to be worthwhile. In his experience with the SMART app, patients use the software for a time, put it aside, and then go back to it when they experience a change in disease course.

“Patients use the SMART app as most everyone uses a new app,” he noted. “It is exciting to use at first, then adherence wanes, but we find that our patients use it during periods where they are having difficulty, and patients feel it is helping the provider team know what is going on.”—By Shalmali Pal 


References

  1. Ralf-Gordon J. “500m people will be using healthcare mobile applications in 2015.” Accessed December 5, 2015 from http://research2guidance.com/500m-people-will-be-using-healthcare-mobile-applications-in-2015/.
  2. Association of American Medical Colleges. “Explosive growth in health care apps raises oversight questions.” Accessed December 5, 2015 from www.aamc.org/newsroom/reporter/october2012/308516/health-care-apps.html.
  3. Krebs P, Duncan D. Health app use among US mobile phone owners: a national survey. JMIR Mhealth Uhealth. 2015;3:e101
  4. National Hispanic Media Coalition. “Trends in Latino mobile phone usage and what they mean for U.S. telecommunications policy.” Accessed December 8, 2015 from http://nhmc.org/sites/default/files/mobile_policy_report.pdf.
  5. Shah N, Jonassaint J, De Castro, L. Patients welcome the Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART). Hemoglobin. 2014;38:99-103.
  6. ClinicalTrials.gov. “SMART Mobile Application Technology Utilization in the Treatment of Sickle Cell Disease Post Day Hospital Discharge (NCT02475993).” Accessed December 8, 2015 from https://clinicaltrials.gov/ct2/show/NCT02475993?term=mobile+app&cond=%22Hematologic+Diseases%22&rank=1.
  7. ClinicalTrials.gov. “Use of a Mobile-based App for SCD Patients (SMART) (NCT01833702).” Accessed December 8, 2015 from https://clinicaltrials.gov/ct2/show/NCT01833702?term=mobile+app&cond=%22Hematologic+Diseases%22&rank=2.
  8. Lymphoma Research Foundation, “Focus On Lymphoma Mobile App.” Accessed December 8, 2015 from www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=8799009.
  9. Aplastic Anemia & MDS International Foundation, “Treatment Tracking Tools application.” Accessed December 8, 2015 from www.aamds.org/treatment-tracking-tools.
  10. IMS Institute for Healthcare Informatics. “Patient options expand as mobile healthcare apps address wellness and chronic disease treatment needs.” Accessed December 5, 2015 from www.imshealth.com/en/about-us/news/ims-health-study:-patient-options-expand-as-mobile-healthcare-apps-address-wellness-and-chronic-disease-treatment-needs.

What Does the FDA Say?

The U.S. Food and Drug Administration (FDA) does not consider the majority of health-related mobile apps to be medical devices, so it does not regulate them. However, in February 2015, the agency did release “Mobile Medical Applications: Guidance for Industry and Food and Drug Administration Staff.”

The draft guidelines state that: “Consistent with the FDA’s existing oversight approach that considers functionality rather than platform, the FDA intends to apply its regulatory oversight to only those mobile apps that are medical devices and whose functionality could pose a risk to a patient’s safety if the mobile app were to not function as intended. This subset of mobile apps the FDA refers to as mobile medical apps.”

So, a mobile app that runs on a smartphone to analyze and interpret electrocardiogram results would fall under the agency’s purview. A fitness or food tracking apps on a smartphone or tablet, though, would not be regulated. In fact, the agency also issued a draft guidelines called “General Wellness: Policy for Low-Risk Devices,” which address what it calls “low-risk” lifestyle apps.

Both guidelines went through the public comment period and a final ruling from the FDA is pending.

SHARE