The National Institute on Drug Abuse (NIDA), one of the components of the National Institutes of Health (NIH), is announcing the “Mapping Patient Journeys in Drug Addiction Treatment” Challenge. The Challenge goal is to inspire the creation of actionable patient journey maps that might further the understanding of the obstacles that patients face in getting treatment for drug addiction, particularly while our country is in the middle of an ongoing opioid crisis. NIDA invites participants to identify specific points during the patient journey where patients encounter the most difficulty, enabling NIDA to focus new research efforts into alleviating those areas of difficulty in patients’ drug addiction treatment journeys.
The Challenge will offer up to three awards for first, second, and third place entries of $50,000, $30,000, and $20,000 each, respectively. The Challenge total purse is up to $100,000.
Subject of the Challenge
Many health systems, doctors, biomedical researchers, and governments are doing their best to help patients become more engaged in their health. Patients who are informed about their condition and involved in their treatment decisions generally have better health outcomes and incur lower costs. But what do patients really want? What does their patient journey look like? Is their patient journey more treacherous when it comes to finding treatment for drug addiction?
In the United States, over 20 million people have drug or alcohol addiction – that’s one in seven people. Half of the U.S. population knows someone who has previously had or currently has a drug or alcohol addiction. The medical term for a drug addiction is a substance use disorder (SUD). Patients are diagnosed with a specific type of disorder based on the primary substance that they misuse, such as an opioid use disorder, stimulant use disorder, cannabis use disorder, or sedative, hypnotic, or anxiolytic use disorder. SUD is a complex but treatable condition. If untreated, it gets worse over time. Doctors determine the severity level of the SUD to help develop the best treatment plan. The higher the severity, the more intensive the level of treatment needed. Most SUD patients are likely to need ongoing treatment and recovery support using a chronic care model for several years. That is, their patient journey will continue for a long time.
What is a patient journey? A patient journey is the ongoing sequence of care events which a patient follows from the point of access into the health system, continuing towards diagnosis and care, and ending in outpatient care or recovery. It can be visualized as an ongoing interaction of care events occurring between the patients and healthcare providers. This journey can include many interconnected activities, ranging from the early education and awareness phase (for example, going online and searching for information about symptoms) to finding a clinic or provider, coming up with insurance or payment, interacting with a physician or other healthcare providers, and finally, appointment follow-ups and reminders for continued care. At the core of health care are the patients and the delivery of services that make them feel safe, comfortable, and ultimately result in improvements to their medical condition. However, for many SUD patients, the health care experience can be challenging, confusing, and inconsistent.
Traditionally, six phases of the patient journey are defined as follows:
- Trigger Event/Awareness: The patients assess their own symptoms, conduct research, consider potential health conditions that may require treatment, and may even reach out to online communities (e.g., posing questions on social media);
- Help: The patient makes initial contact with a health system, including health insurance, via call center, chat, email, mobile, or an in-person visit;
- Care: The patient is assessed at a medical facility (e.g., physician’s office, hospital);
- Treatment: The health system provides the patient with both on-site and follow-up care (e.g., prescriptions, physical therapy, counseling, or suggested lifestyle changes);
- Behavioral/Lifestyle Change: The patient makes changes to daily routines and takes part in proactive healing in order to reduce readmissions and promote long-term wellbeing;
- Ongoing Care/Proactive Health: The patient manages his or her care between clinical visits or admissions; meanwhile, the health system fosters engagement between the patient and physician in order to enable the patient to address symptoms and maintain good health.
Patient journeys are captured in the form of a map. Do you know why it is called a “journey map”? Customer journey mapping is a well-known technique that focuses on determining how customers interact with a particular business. Businesspeople traditionally use customer journey maps to define all of the customers’ steps and to create positive experiences, as this helps to ensure customer satisfaction and leads to repeat business and customer loyalty. Medical professionals are now applying these visual tools, which are so successfully used in business, to health care. We all know that interacting with the health care system is not as simple as buying a carton of ice cream. Referral forms can go missing, medical office phone systems can be challenging to navigate to make an appointment, waiting times are extended, available beds are difficult to find, the disease or its treatments are long and painful, and most interactions are heightened by the sense of the unknown, fear, uncertainty, and, for SUD, stigma.
Visually mapping the journey allows any organization involved in providing health care to “see” and understand the patient experience by breaking down the management of a condition or treatment into a series of clear steps. These steps could be activities, interactions, or interventions that ultimately create the patient pathway or process of care. When all patient interactions with their healthcare are described as a map of the long treatment journey, that patient experience broadly highlights touchpoints with a healthcare system through the perspective of the real patients — what they think, feel, say, and do. The resulting visual tool incorporates both the physical and emotional journey with the aim of capturing patient obstacles, interactions, and movement through the health care system along with the patient behavior, feelings, motivations, and attitudes across the episodes of care. Journey maps go beyond the static and fixed view by illustrating the relationship between the patient and the healthcare organization as dynamic and changing within the system. They also help to visually convey knowledge and insights around patient experience and promote empathy towards patient groups by placing them at the heart of the healthcare delivery process. By issuing this Challenge, NIDA invites the SUD provider and patient communities to create patient journey maps to distill patient insights and emotions into a concise, visually compelling story of the patient’s experience. If you still have difficulties imagining what this visually compelling story could look like, the examples of traditional ways to visually map patient journeys could be found by simply searching “patient journey map” in your favorite search engine.
Given the complexity and high number of interdependencies that exist within SUD services, NIDA is eager to challenge the SUD provider and patient communities to design patient journey maps that are both comprehensive and accessible. If you are someone with access to, experience with, and knowledge of the SUD patient community, you are invited to create a patient journey map throughout SUD illness to recovery so that NIDA can better understand positive and negative patient interactions with the health system. Examples of the types of people NIDA is encouraging to participate include, but are not limited to: SUD patients, family members, patient advocates, academic researchers, pharmaceutical business development specialists, customer relations managers, marketing agencies, addiction group therapists, social workers from recovery centers, and medical school professors teaching students empathy and inclusion. As patient journey mapping is a way of visualizing and summarizing the service experiences that patients have over time, all from the perspective of the patient, it is very important to have access to the SUD patient population to be able to capture their specific experiences. NIDA is specifically interested in mapping a consecutive series of ‘touch points’ between the patient and SUD services where patient experience is actively shaped. This is because looking at this map enables an organization involved in healthcare, such as NIDA, to uncover the major “pain points”/”aha moments” (e.g. what the organization is doing poorly or that does not meet the patient’s expectations) and opportunities (e.g. what exactly could be done to improve/resolve the pains or create experiences that exceed patient expectation). Often, in patient journey mapping, those “pain points” and “aha moments” are collectively called “moments of truth” (gaps between the desired and the real experience). In turn, knowing and understanding each contact and gap can help the healthcare system to create strategic outcomes that improve SUD patient satisfaction and engagement. It will also help to better define where more targeted research efforts can or should occur, improving overall SUD care and outcomes.
How are the patients’ journeys usually created? Participants (individually or in groups) are asked to split their stories into phases (these can be visualized as sections, chapters, or scenes) to help others understand how the journey changes. Between three and five phases is usually practical from a patient perspective, but it’s advisable to use as many phases as needed. Participants are then asked to describe their overall experience of each phase in more detail. Participants may start this by using a scale from one to ten to rate how satisfied SUD patients felt during each phase, followed by a prompt to describe feelings and emotions associated with each phase, noting these on the journey map. The map should highlight any especially good and bad service experiences in each phase. It is also helpful to analyze the values and actions that led to these positive and negative experiences, with an emphasis on the need to learn from both good and bad experiences. Next, the participants should be asked to think about improvement ideas and suggestions. These can be summarized on the journey map and detailed on separate sheets if more space is needed. If a group of patients contributes to the SUD patient journey mapping, you can take photos of the individual maps and develop a master version integrating all the different versions you have. Start your master map with the all-inclusive draft and then simplify it until key improvements are clearly contextualized in the journey phases and related experiences of patients. This final diagram commonly becomes a central reference for improvement teams and future work. It is important to make sure it is accurate, emotionally rich, and visually simple. Summarize your suggestions for specific improvement opportunities. While this describes a general outline for the patient journey mapping, NIDA challenges the community to be as creative as possible.