Chronic disease self care: Is there an easier way?

For most healthcare consumers today, it’s not an easy job to manage personal health and interact with providers, insurers and other parties. While change is afoot in the healthcare industry to simplify processes and deliver more patient-centric care and experiences, it’s still early in the game. People living with chronic conditions such as heart disease, arthritis, asthma or diabetes, face significant challenges and the resources available, at times, seem limited.

Managing the disease is ultimately a shared responsibility between the provider and the patient, but a significant burden rests on the patient’s shoulders. Patients are expected to adhere to medications and other therapies, track symptoms such as blood pressure, glucose levels and pain, and follow guidelines for nutrition, exercise and sleep, to name a few. It’s difficult for anyone, let alone someone living with one or more chronic diseases, to remember all of the physician’s instructions after leaving the clinic, and handouts can easily be misplaced. If a patient needs to get information following a visit, it may be challenging to quickly reach the physician or nurse for verification or resources. If the patient is not seeing results from the prescribed treatment and other lifestyle modifications, adherence to medications will falter or completely fail. The treating physician is likely unaware of what the patient is doing until he or she sees the patient in the office again – weeks, or even months later, at a critical state where urgent care may be needed.

It’s time for better practices to help those living with chronic diseases, which account for more than two-thirds of all healthcare costs, according to the National Council on Aging. As of 2012, the Centers for Disease Control & Prevention (CDC) reports that roughly half of all adults in the United States, 152 million people, had one or more chronic health conditions. One of four adults had two or more chronic health conditions. The time and stress of self-management intensifies when an individual is suffering from multiple conditions.

On a positive note, many chronic diseases are preventable or at least very manageable. Digital health technologies are beginning to show real promise in helping individuals with chronic disease take control, gain knowledge, reduce stress and even lessen symptoms.

Overcoming the top barriers to self-management through digital health

Even though age, demographics, cultural and socioeconomic factors can influence the patient’s motivation and ability to handle self-care, many of the challenges are universal. People are busy and often dealing with other sources of stress beyond their health. Some don’t have a strong support system at home to back them up. Remembering to take medications, record clinical data such as symptoms and biometrics, and stay motivated to follow treatment and lifestyle guidelines is a lot of work for many people. Fortunately, digital health solutions are becoming more readily available to meet the needs of this patient population around issues such as:

• Medication adherence: The current state of medication adherence has much to be desired. Nearly three out of four Americans report that they do not always take their medication as directed, a problem that causes more than one-third of medicine-related hospitalizations, nearly 125,000 deaths in the United States each year, and adds $290 billion in avoidable costs to the health care system annually, according to research from the National Consumers League. There are several factors behind this trend. The patient may forget, experience side effects which aren’t properly communicated to caregivers, struggle to pay for the drug or simply may not want to take medicine. Without education and encouragement, these at-risk patients don’t see the importance of sticking to their treatment regimen to prevent worsening symptoms and complications.

Through digital health, providers can be more proactive in troubleshooting issues related to adherence. If a patient has stopped taking the medication, the app will notify him and probe for the reasons. Such feedback is powerful: people will be honest with technology, as it doesn’t judge. From there, the app can deliver daily reminders, send a note to the doctor regarding side effects, or suggest a pharmacy where the drug can be purchased at a lower cost, among other actions.

• Record-keeping: People living with chronic disease need to track many data points every week, from when and what dose of drugs they’re taking, symptoms, diet and activities and even mood. Paper journals are too time-consuming. People easily misplace or forget about them. Further, the elderly, those for whom English is not the first language, and disabled patients may have trouble recording information accurately. Yet without regular record-keeping, physicians can’t measure progress nor determine the cause of complications or worsening symptoms.

A mobile app can solve many of these problems, primarily due to ease of use. An individual can use any device, from a tablet, phone, or even a voice recognition system in the car to record clinical data. Forms on the app can be pre-populated with simple yes or no questions, and the solution can provide feedback when needed. The trend of integrated medical device and communications devices is automating data collection in many areas. Consumer wearables like fitness sensors can transmit data automatically to an mHealth application. Consider a blood pressure cuff integrated with a smartphone to correlate metrics with behavior and treatment. Digital medicine company Proteus has developed sensor-enabled pills which alert a sensor-enabled patch on the patient’s skin when the pill reaches the stomach, delivering caregivers a continual data feed for medication adherence.

• Administrative complexity: Most of us don’t look forward to visiting the doctor because of the time involved, due to wait times and completing long forms. A patient may not have all of the information handy regarding treatment and symptoms. Patients become frustrated with the process, and may even skip appointments altogether.

Digital health tools can serve as a valuable adjunct to the electronic medical record (EMR), sending scheduling updates, appointment and test reminders and forms directly to the patient’s mobile device. The app could show predicted wait times, so that patient can arrive later if the office is running behind. Imagine the relief of being able to fill out forms prior to the visit, in just a few minutes on your mobile phone. This also saves the medical office time and money, with more efficient workflow. Information, which a patient enters on their device, can flow automatically into the EMR, too. At the time of the appointment, the physician has the latest information about the patient right on their computer screen. By sending additional information ahead of time, patients could even enjoy shorter appointments. This sounds simple, although it will require process changes for medical offices and tightly-integrated systems. Achieving this will be one way to improve patient satisfaction and outcomes, two critical facets of healthcare reform.

• Caregivers: In some cases, the job of disease self-management falls squarely on the shoulders of an adult child, sibling or spouse. An estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities or chronic conditions.  Most caregivers are ill-prepared for their role and have little or no support, according to the Family Caregiver Alliance and other sources.

Caregivers may have trouble communicating with the patient about her condition and symptoms, collecting and recording information such as nutrition and ensuring that the individual is following the treatment plan. There is ample frustration and stress. Worse, it’s not uncommon for caregivers to become ill themselves, suddenly providing a gap in care. Digital health tools can support caregivers by allowing access to the patient’s health record, care plans and physician notes. When patients are unable to use these systems on their own, caregivers can take over and serve as a direct line to the provider. That is empowering for both patients and caregivers. It can also save time and reduce the daily stress for caregivers.

• Encouragement and guidance: People living with chronic disease may not have a strong support system at home or work. Without someone on the sidelines, a coach to encourage and guide, it’s difficult to stick with the plan of care and the steps needed to live a healthier life. Upon manual or automated entry of data into the digital health system, patients can get quick feedback. They might receive information on how to modify their diet or receive praise for their progress. An application can review data over time for patterns indicating a negative trend, such as high blood pressure at certain times of the day. Data analysis can also even prevent critical events, such as a heart attack. If biometric readings indicate signs of cardiac distress, the patient (or the assigned caregiver) is notified to get to the hospital immediately. Adaptive software learns about the at-risk indicators for a particular individual, and can provide preventative advice. This can help her become healthy, feel good and experience a higher quality of life.

There’s no substitute for the healing hand of a healthcare provider when patients are ill. Yet the days and weeks between in-office visits can be lengthy, leading to risks of someone falling off the rails with self-care. Digital health solutions can provide a needed stepping stone to bridge the gap between the healthcare system and individuals living with chronic diseases. Patients should be on the look out for these solutions and encourage their healthcare providers to participate.