Applying Human Centered Design to Understand the Chronic Disease Patient Experience

Exploring the Digital Divide for Baltimore’s Heart Failure Patients

Late 2017, after a year of applying Human Centered Design at the local Baltimore City Health Department through technology, branding, and policy, I joined a new healthcare innovation team at a hospital in Northwest Baltimore. While exploring what “digital innovation” meant, we wanted to better understand a major problem existing in healthcare: the Heart Failure (HF) patient experience and the use of digital technology by patients and caregivers to manage health.

Hundreds of new health technologies are released each year and healthcare systems are overwhelmed with adopting them because of the high cost. Besides the financial investment, healthcare institutions should consider the ways in which their patients will want (or have the ability to use) the technology.

In the case of the digital divide and patient experience with chronic diseases, we need new approaches to understanding patient and clinician needs to implement innovative and accessible care solutions that patients will want or be able to access and use.

Human Centered Design in Healthcare

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 from the user helps incrementally improve the solution. The process is often identified in 3 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
Image from Ideo’s Human Centered Design Field Guide

HCD in the healthcare setting is becoming more common as the industry recognizes the need to creatively 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.

It is no secret that a major issue in healthcare is the overlap in the digital divide and chronic disease populations.

Applying HCD to the Heart Failure patient and clinician experience while considering the implications of the digital divide provides the industry with a fresh perspective on the many ways in which the process can be improved.

Heart Failure patients are older and not generally using digital technologies; however, tele-health and virtual care solutions continue rapidly growing because they are a cost effective way to address needs and access to care.

The problem with a focus on digital care solutions is that patients will be left behind for the sake of adopting new technology into care practices, especially if the patient’s ability (or inability) to use the technology is not taken into consideration when adopting.

Many patients with chronic diseases in Baltimore do not have the finances or digital literacy to adopt technology, especially if it is not an experience designed for them.

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 a framework to approach the larger problem:

  • How might we use technology with Heart Failure patients to improve their experience?
  • What do we need to consider for more digital solutions integration?
  • How might a digital solution help patients with medication adherence?

Many Heart Failure patients in Baltimore City are from vulnerable populations– zip codes that have life expectancy 10 years younger than the national average and almost a 20 year gap between poor and rich neighborhoods in Baltimore — they suffer from poverty and lack of resources like transportation, access to healthcare, low literacy and e-literacy rates, and access to healthy food.

Most 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 face numerous obstacles to access 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 emergency department.

Our Methodology

Following the previously mentioned methodology outline, our team focused our efforts on Phase 1: Inspiration (Empathy):

  • Clinician and Patient Observation (Contextual Inquiry)
  • 17 Patient Interviews
  • 7 Physician Interviews
  • 1 Focus Group
  • Personas
  • Clinician and Patient Journey Map
  • Identify Needs
  • Identify Opportunities

Between November 2017 and January 2018, we conducted interviews and observation with 17 patients with various classes of Heart Failure, 4 patient family members, and 7 clinicians. A total of 50 hours was spent in contextual inquiry.

Interviewing and observation occurred at the Heart Failure Clinic (HFC) and Heart Failure Inpatient (INP) floor. Patients volunteered their time after their visit or allowed designers to shadow their visit, which meant that designers 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.

In addition to interviews and observations, we conducted a focus group; however, we encountered a major limitation: despite having invited over 30 patients and confirmed 8 of them the day before the group interview, only 1 patient and spouse showed up. The other patients did not show up because they were too ill or did not have transportation. I reached out to these patients by phone and ran into scheduling difficulties because most patients did not have their own phone. Instead, family members would relay messages, but usually calls were not returned (reached out maximum of 3 times for respect for the patient).

The digital divide was quite apparent in this population because of the age differences, most patients being over 60 years. The financial gap also impact patients because most of them lived in low income neighborhoods. As a result, other methods for outreach, like email or SMS, was not available to schedule and would have been very inappropriate for this set of patients. The privilege of healthcare decision makers needs to be analyzed when determining a care plan for the patient, especially regarding the types of technologies that can be accessible to the populations experience chronic disease.

We conducted the focus group with the 2 participants, 2 note-takers, the Director of Patient Experience, and a cardiologist. No confidential or identifying information about the patient was asked or recorded. As a result, the analysis established is based on the people who could show up. There is still a large gap of understanding in this population and needs additional design research for improved ideation.

Interview questions focused on the patient experience related to Heart Failure, process at the hospital, clinic, and primary care physician, 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 2 main tools to better empathize with patients: User Personas and Journey Mapping. In total, 10 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 1 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 3 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 persona 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, we could focus on patterns or cases that best suite the patient experience.

An example of the personas:

Journey Mapping

Another concept we utilized to empathize with the patient is a Patient Journey Map. The map is a high-level view of the patient experience, not directed with any specific patient persona in mind; rather, the general focus allows problem analysis and solution ideation to be derived from the general flow across the care 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 3 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 3 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 co-morbidities; therefore, they cannot help coordinate care.

Phase 2 Ideation: Applying Design 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 will ideally align with the strategic vision of the hospital. Some opportunities are are able to be addressed in the short-term while others opportunities require a systemic overhaul.

  • 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 2 main factors: age and family or caregiver 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 (65 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 caregivers utilized smartphone, tablets, or computers. Less than half of the family caregivers mentioned using applications to manage care; almost all caregivers agreed that digital tools would improve the caregiving 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 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. 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 design research and supported the feedback loop in user experience design modifications that needed to be implemented in the application to accommodate older patients. As of March 2018, the pilot was in full swing at the hospital to see if it could be expanded to other patients and chronic diseases.

There are so many opportunities to build upon this design 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 design 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 and solutions for patients.

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.”