Applying Human Centered Design to Better Understand the Digital Divide and Congestive Heart Failure Patient Experience

Introduction: Human Centered Design in Healthcare

Addressing chronic disease patient care in healthcare is daunting, especially at the industry scale. At the hospital level, patient care is complex because the numerous stakeholders often prevent the main problem from being clearly defined and solved. In the case of the digital divide and patient experience with Heart Failure, we need new approaches to understanding patient and clinician needs and innovative solutions to improve access to care and the care provided. In this research, we investigated the patient experience in a Heart Failure Clinic in Baltimore City to better understand the use of digital devices by patients to manage their health. When healthcare institutions are adopting digital solutions, they must understand the ways in which their patients will want or have the ability to use the device.

Human Centered Design (HDC), derived from the concept of Design Thinking, is a creative problem-solving methodology based on insights learned from empathizing with the end-user’s perspective. Ideally, HCD is implemented in an agile, iterative environment where constant feedback is used to incrementally improve the solution. The process is often identified in three phases:

  1. Inspiration: Define the problem, identify the target audience,  and build empathy
  2. Ideation: Synthesize insights, idea generation, set goals, and rapid prototyping
  3. Implementation: Try ideas and measure outcomes

HCD in the healthcare setting is becoming more common as the industry recognizes the need to innovatively solve problems, especially those related to chronic diseases, operational processes, and digital medicine. Design Thinking has been used at hospitals such as Johns Hopkins and the Mayo Clinic to improve a variety of services like patient engagement and prenatal care.

As stated in the Harvard Business Review article “Health Care Providers Can Use Design Thinking to Improve Patient Experiences” (2017):

“One of the most promising approaches for understanding patients’ experiences has been design thinking, a creative, human-centered problem-solving approach that leverages empathy, collective idea generation, rapid prototyping, and continuous testing to tackle complex challenges. Unlike traditional approaches to problem solving, design thinkers take great efforts to understand patients and their experiences before coming up with solutions. This thorough understanding of patients (for example, those who regularly miss appointments) is what guides the rest of the process. And because design thinking involves continuously testing and refining ideas, feedback is sought early and often, especially from patients. Design thinking has already taken hold in health care, leading to the development of new products and the improved design of spaces… If more leaders embrace design thinking, they can leverage a deeper understanding of patients to solve such problems, achieving better clinical outcomes, improved patient experience, and lower costs along the way.”

The process focuses on understanding the behavioral factors of patients to identify patterns and gain insights for better problem solving. HCD requires that an investment be made at the beginning of the problem-solving process to eventually discover more effective and efficient outcomes. Not only does the design thinking process assist in developing a business case for policy changes, it will help facilitate clinician and patient engagement in the process. In the end, the empathy established for all end-users, like patients, clinicians, and other stakeholders, will provide more innovative opportunities, improve the care process, and improve patient satisfaction.

Currently, one of the major issues in healthcare is the digital divide and chronic diseases. Applying HCD to the Heart Failure patient and clinician experience along with the digital divide will provide the industry with a fresh perspective on the many ways the process can be improved. Heart Failure patients are older and not usually using digital technologies; however, telehealth and virtual health solutions continue rapidly growing because they are a cost effective way to address needs and access to care.

We want to reimagine the Heart Failure experience across the continuum of care. One of the major struggles facing Heart Failure patients and clinicians is medication adherence. HCD can be used to frame this problem in a generalized way to provide more context and information for analysis: How might we use technology with Heart Failure patients to improve their experience? What do we need to consider for more digital solutions integration?

Many of the Heart Failure patients in Baltimore City are from vulnerable populations– zip codes that have life expectancy ten years younger than the national average and almost a 20 year gap between poor and rich neighborhoods— they suffer from lack of resources like transportation, access to healthcare, low literacy and e-literacy rates, poverty, and access to healthy food. As a result, many of these patients have a very difficult time managing their disease, even if they are able to receive care from a primary care physician, specialist, or hospital. Many people who are likely to need care have a very difficult time being able to receive it. Additionally, many of these patients end up in the emergency room resulting in a costly visit, which is especially concerning because their condition could have been proactively managed before entering the ED.

By utilizing HCD methodology to analyze chronic disease problems, the healthcare industry will be able to save lives, reduce readmissions, and reduce healthcare costs.

Methodology in Human Centered Design

Following the previously mentioned methodology outline, our team focused our efforts on research:

  • Phase 1: Inspiration (Empathy)
    • Clinician and Patient Observation (Contextual Inquiry)
    • 17 Patient Interviews
    • 7 Physician Interviews
    • 1 Focus Group
  • Phase 2: Ideation
    • Personas
    • Clinician and Patient Journey Map
    • Identify Needs
    • Identify Opportunities
    • Prototyping

Between November 2017 and January 2018, interviews and observation were conducted with 17 patients with various classes of Heart Failure, 4 patient family members, and 7 clinicians.

Interviewing and observation occurred at Sinai Hospital Heart Failure Clinic (HFC) and at Northwest Hospital Heart Failure Clinic and Inpatient (INP) floor. Interviews and observation were conducted with patients who volunteered their time during after their Heart Failure Clinic visit or who allowed researchers to shadow their visit, which meant that they silently observed the visit with the doctor and asked questions at the end of the appointment. No confidential or identifying information about patients was asked or recorded.

We conducted a focus group; however, we encountered a major limitation when trying to host it. We proved unsuccessful despite having invited over 30 patients and confirmed eight of them the day before the group interview. Only one patient and a spouse showed up for the focus group. The other patients did not show up because they were too ill or did not have transportation. Furthermore, scheduling focus groups with this population was challenging because patients only used phones (some cell phones), rather than email or electronic/digital methods. We conducted the focus group with the two participants, two note-takers, the Director of Patient Experience, and a cardiologist. No confidential or identifying information about the patient was asked or recorded.  

Interview questions focused on the patient experience related to Heart Failure, process at the hospital, clinic, and PCP, and technology use. The questions were asked in an open-ended format to facilitate extended answers that did not produce “yes” or “no” responses.

Example questions included:

  • How do you feel during your Heart Failure Clinic visits? What makes you feel this way?
  • What HF or lifestyle related programs do you participate in?
  • What challenges do you face with taking your medications?
  • What do you think would help you with taking your medications?
  • Have you or would you use (text/call/email) reminders to take your medication?
  • What do you wish your family and friends knew about your treatment?
  • Explain your comfort level using technology (smartphones/tablets/computers)?
  • What are your thoughts on using technology to help manage your treatment?

Patient Personas

After completing the interviews and observation, we used two main tools to better empathize with patients: User Personas and Journey Mapping. In total, ten patient personas were created based on aggregated details and was segmented to be representative of the different types of patients who are a part of the Heart Failure journey. None of the personas are representative of only one patient; the details used in each persona are non-identifiable and do not correlate specifically with any patient interviewed or observed. Each persona is based off of patterns that emerged from all of the data presented.    

In addition to interviews and observation, patient personas are based on quantitative and qualitative data analysis from workflow development, the HPM Internal Database, Chesapeake Regional Information System for our Patients Regional (CRISP), and Clinical and Group CAHPS (CGCAHPS) Survey – based on patient feedback surveys about cardiologists at the hospital.

The personas were grouped into three areas based on the patient’s interaction with the continuum of care: Heart Failure Clinic (outpatient), Heart Failure Inpatient, and mTeleHealth participants. Needs, opportunities, and technology use varied greatly depending on the patient’s place in the spectrum.

Each patient person included demographic and medical data (age, zip code residence, marital status, employment, insurance, education level, e-literacy, class of Heart Failure, length in Heart Failure Clinic, length of diagnosis, co-morbidities, number of readmissions, number of monthly visits to clinic, and method of referral to Heart Failure Clinic). Additional information included a generalized quote about their experience, family support, sociability, activity level, mobility (transportation), medication adherence, and technology usage with potential digital solutions. Finally, a backstory was crafted for each persona to provide context.

The level of detail described in each persona provides a nuanced aspect of the wide spectrum of patients who experience Heart Failure. By creating these archetypes and empathizing with their needs, the hospital can focus on specific patients to better serve them.

One of the personas:

Journey Mapping

Another concept utilized to empathize with the patient is the Patient Journey Map. The map is a high-level view of the patient experience, not directed with any specific patient archetype in mind; rather, the general focus allows problem analysis and solution ideation to be derived from the general flow across the spectrum. Each patient personas can be placed on the journey according to their experience. The map is also created based off of insights from interviews and observation with clinicians and patients.

For Heart Failure, the general experience included three main stages that outlined patient actions:

  1. Pre-Diagnosis: Symptoms begin.
  2. Diagnosis and Treatment: Heart failure diagnosed by primary care physician, hospital, or cardiologist. Patient referred to the Heart Failure Clinic and/or other outpatient settings.
  3. Management: Visits Heart Failure Clinic and outpatient settings or programs. Returns to home or long-term care facility.

The chart below displays each of these stages along with patient feelings, patient needs, physician needs, and digital intervention opportunities.

Major Takeaways

The next step in the HCD process is synthesizing insights to identify patterns that help with ideating opportunities or digital solutions. The patient and clinician needs displayed in the Journey Map create the grouping of the major problems across the continuum of care. Major themes emerged based on these needs, grouped in three segments: Patient Engagement, Gaps in Care, and Communication.

Patient Engagement

  • Patients want more communication with Care Team (prevent delay in receiving care or contacting provider).
  • Patients and clinicians want easier appointment scheduling (the current system may be confusing because there are multiple phone lines to reach the Heart Failure Clinic office or physician office; clinic and physician office hours limited to daytime; receptionists used various tools/ calendars to schedule appointments which often frustrated physicians because of frequent scheduling conflicts or quickly changing schedules).
  • Patients are overwhelmed by information relating to Heart Failure and their comorbidities, especially relating to medication adherence and medication changes. Many patients had difficulty understanding their discharge instructions (used language that they did not know).

Gaps in Care

  • Patients struggle with medication adherence for various reasons: too many medications to track; confusion about timing or frequency of medications; side-effects of medications prevent them from wanting to take them as prescribed.
  • Patients need rides to appointments (resulting in no-shows).
  • Patients want more resources for assistance post-discharge (reminders for medications, more instructions for their care at home).
  • Patients and family members supporting Heart Failure patients lack access to mental health resources.
  • Patients lack understanding of self-care strategies (diet, drug interactions, physical activities).
  • Patients in Skilled Nursing Facilities need increased engagement to assist with care.
  • Patients want help with side-effects management.
  • Some patients lack home support and have to care for themselves (main issue with accountability or motivation for care).

Communication

  • Care Team wants better coordination and standards (especially regarding tracking medications and completing medication reconciliation).
  • Patients are frustrated by multiple physicians managing condition (PCP, specialists, clinic, etc.) because each physician provides different medications and instructions for care. Patient struggles with deciding who to listen to.
  • Heart Failure Clinic clinicians are frustrated because they are not notified when patients are readmitted to the ER or hospital for Heart Failure or comorbidities; therefore, they cannot help coordinate care.

Applying Research for Change

After identifying the needs of patients and clinicians, the team ideated possible solutions to further investigate and prioritize to improve the Heart Failure patient experience. These opportunities are outlined in the Journey Map as considered across the continuum of care. These opportunities will ideally align with the strategic vision of the hospital. Some opportunities are are able to be addressed in the short-term while others need additional planning and support for implementation.

  • Pre-Diagnosis: Early identification of patients with HF; digital health education.
  • Diagnosis and Treatment: Secure communications among Care Team and directly with patients to coordinate care (texting, emailing, voice-to-voice); easier referral and auto-enrollment; EMR decision making; open appointment scheduling; ride-sharing apps; e-prescribe apps.
  • Management: Remote monitoring with 24/7 access; secure communications with patient; open appointment scheduling; ride-sharing apps; medication management and virtual therapy; auto-reminders for medications.

Use of technology and e-literacy ranged from full distrust of any tools to competent smartphone and tablet users. Patients’ use of technology usually depended on two main factors: age and family support. It appeared that younger patients (35-60 years) were more likely to feel comfortable using smartphones, tablets, or computers, especially relating to their medical information and managing their disease. Older patients (75 years and older) were less likely to trust technology or be willing to use the tool as a way to manage their disease.

There were some exceptions to this rule in the older group; however, the majority of older respondents said that they were only comfortable with speaking over the phone or had a flip phone. Most patients had a younger family member helping them with care (a child or younger sibling), and those caretakers utilized smartphone, tablets, or computers. Some family caretakers mentioned using applications to manage care; most agreed that digital tools would improve the caretaking experience. The younger patient group affirmed that they would be willing to adopt various digital technologies, like phone or tablet applications, to improve medication adherence and treatment management. All patients agreed that they would like more options for interacting with the care team. Each persona goes more in depth to explain e-literacy levels as well as opportunities for use with those specific archetypes.

The Heart Failure Clinic took the first step to designing a better patient experience. The next stages of the HCD process include continuing ideation with goal setting and rapid prototyping. Then, in the final stage of implementation, the team will try the ideas and measure outcomes. The feedback loop provides a space for patients and clinicians to be involved in the decision making process, providing them with agency to co-create a better overall experience.  

During my experience at the hospital, we planned and started the pilot of a medication adherence mobile application to test whether or not patients would adopt the technology and improve their medication adherence. The Heart Failure Patient was a new use case of the company. I worked with their design team by providing the research executed here and supported the feedback loop in user experience design modifications that needed to be implemented in the application to accommodate for older patients.

There is immense opportunity to build upon this research and apply its learnings to other chronic disease states, especially regarding technology use. Closing the digital divide with Heart Failure patients is an enormous industry-wide struggle, though this research indicates that there are various options based on the needs expressed by patients and clinicians. As more technologies are developed and hospitals consider adopting them, we must encourage a user-centric approach to ensure that the solutions are addressing the right problems.

As the design industry leader Ideo says, “When design thinking methodologies are applied to healthcare they lead to a human focus and an openness to generate and test lots of ideas to find more innovative, far-reaching solutions.”

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