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Patient and Caregiver Perspectives¹

The workshop’s first panel session aimed to provide some understanding of how patients and caregivers struggle with understanding medication instructions, particularly when patients require multiple drugs to treat their conditions. The three members of the panel were Bobbie Reed, the mother and caregiver of a kidney transplant recipient who also serves as the Pennsylvania Kidney Advocacy Committee Liaison for the National Kidney Foundation;² Caleb Sexton, a patient with psoriatic disease who is also an advocate with the National Psoriasis Foundation³ and a designer who focuses on health literacy technology research and human-centered design; and Darvece Monson, a nurse, patient with chronic kidney disease waiting for a kidney transplant, and founder of the advocacy organization More Than Your Kidneys.⁴ Terri Ann Parnell, principal partner and founder of Health Literacy Partners, moderated the panel session and the open discussion that followed the panelists’ remarks.

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¹ This section is based on the presentations by Bobbie Reed, the mother and caregiver of a kidney transplant recipient and the Pennsylvania Kidney Advocacy Committee Liaison for the National Kidney Foundation; Caleb Sexton, a patient with psoriatic arthritis, an advocate with the National Psoriasis Foundation, and a designer who focuses on health literacy technology research and human-centered design; and Darvece Monson, a nurse, patient with chronic kidney disease waiting for a kidney transplant, and founder of the advocacy organization More Than Your Kidneys. The statements are not endorsed or verified by the National Academies of Sciences, Engineering, and Medicine.

² See https://www.kidney.org (accessed July 25, 2017).

³ See https://www.psoriasis.org (accessed July 25, 2017).

⁴ See http://www.morethanyourkidneys.org (accessed July 25, 2017).

To start the conversation, Parnell asked the panelists to share one or two lessons learned from their overall experiences with medication communication. Reed, whose son received a kidney transplant, said the biggest difficulty for her with regard to managing her son’s medications was how suddenly she had to take charge. When she and her son were in training for home hemodialysis, she was linked to a pharmacy whose specialty was dialysis patients and which managed all of her son’s medication. That pharmacy, she said, provided a schedule of when her son was to take the various medications he was prescribed and delivered those medications to their house automatically. However, access to that specialty pharmacy ended once her son received his new kidney and suddenly, she said, it seemed that she was at her neighborhood pharmacy every day, picking up one medication after another. Soon, though, she discovered that her pharmacy also offered a specialty service that provided a nurse case manager and around-the-clock access to a customer service representative for no charge. This specialty service coordinated all of her son’s medication so that she only had to make one or two trips per month to the pharmacy to pick up his prescriptions.

To help make her job easier still, Reed developed a spreadsheet that denoted which medications her son needed to take at what times and to keep track of the number of pills on hand. This spreadsheet, which she faxes to the nurse case manager, serves two purposes, she explained. First, it lets the pharmacy and her son’s doctors know that he is adhering to his medication plan, and second, it alerts the pharmacy as to when refills are needed, which enables the pharmacy to contact her son’s care team and the transplant center clinic to arrange for those refills, taking the burden for doing so off her. “That was very crucial and has helped me tremendously,” said Reed, who suggested that this type of mechanism should be adopted for all patients requiring multiple medications. “When I took [the spreadsheet] to the specialty pharmacy, they said they did not have anything like it and that it was an ingenious idea.” In fact, the pharmacy has now adopted it as a standard part of its protocol. She noted that the responsibility for adhering to a medication plan still rests with the patient and caregivers, but it does make managing the process easier. She also remarked that the specialty pharmacy idea is a great one that needs to better promoted. “I just happened to fall upon it one day when I was at the grocery store and saw a sign that read, ‘Did you know about our specialty pharmacy services?’”

Sexton, who has been dealing with the life-changing experience of having psoriatic disease for the past 10 years, agreed with Reed that services such as specialty pharmacies can play an important role in providing patients with a better foundation for understanding their medications. Such services can help patients learn how to communicate the issues that can arise when someone takes multiple medications and has to deal with

multiple comorbidities associated with their medical issues. He called for the medical system to provide patients with information about the ecosystems that exist to provide long-term support outside of the medical office. Wishing that he had received that kind of information 10 years ago, he noted the existence today of organizations such as the National Psoriasis Foundation and social media networks that are available to help patients better understand their conditions and better communicate with their health care providers. In his case, being put on systemic chemotherapy drugs and biologics and having creams to put on was terrifying at first. Nobody told him what these various medications did and how they might interact to produce side effects, and nobody told him that the effects of these medications were something he would have to endure to get better.

Speaking from her perspective as both a nurse and a hemodialysis patient, Monson said a greater emphasis is needed on communicating with patients about toxicity, side effects, and adverse reactions. “The patient population generally does not understand the difference,” said Monson. Thanks to her nursing experience, she said, she has been able to reduce significantly the opportunity for medication error to occur, but she doubted that she would have been so successful without that experience. She also noted that while she is young, mobile, and active, the majority of renal patients are elderly and immobile, and many are not cognitively aware or able to communicate effectively.

When she was first diagnosed with kidney failure, she was put on 14 medications, and perhaps not surprisingly, she experienced complications resulting from taking multiple medications. One night, about 6 weeks into her new life as a renal failure patient, she awoke coughing and could not stop. At first, she could not figure out why, but then her “nurse light clicked” and she realized that her coughing was a side effect of taking four different antihypertensive agents. “That is going to happen, but someone else in my situation does not know that. It was not printed on the medication to look for this side effect,” said Monson. She polled her fellow patients at her local dialysis center and found out that 87 percent of them did not know about this type of medication complication. She also noted that most of her fellow dialysis patients were coming from nursing homes and acute care centers and were drained by the experience of traveling to the center and undergoing dialysis. Showing someone in that condition a video explaining their medications and expecting them to develop a better understanding is unrealistic, she said. “We have to consider that and come up with better ways to communicate effectively the detriments,” said Monson.

Before asking the panelists to answer another question, Parnell recounted some of the words the panelists used in a phone call prior to the workshop to describe their experiences communicating with care team

members about medications: intimidated, barriers, overwhelmed, terrifying, confusions, side effects, statistical information to help with risk and benefit, challenging, hard, discouraging, put off, and taken aback. “I found it overwhelming to hear all of those terms used to describe communicating about medications,” said Parnell. She then asked the panelists to state the one question they wish their prescribing clinicians would ask them when prescribing medications or changing a medication regimen. Sexton said he wanted to be asked what his biggest fear was, for in his mind this would have conveyed empathy regarding the challenges he would face and a willingness to help him, both then and in the future, deal with the unknowns regarding the many medications he would be taking for the rest of his life.

Parnell commented at that point that the idea of asking a patient about their fears was a revelation to her. “I thought I did a pretty good job over the years, always open to learning,” she said. “I would ask, ‘What is your typical day like, do you think you will be able to do this, who fills your medications, are you able to get them?’ I would ask many questions, but never did I ask, ‘What is your biggest fear or what is your biggest concern?’”

Reed then recounted an experience she had at a pretransplant surgery visit with her son’s surgeon. The surgeon reviewed the medications her son would be taking after receiving his transplant, and when she asked the surgeon about a substitute for one of the immunosuppressants in this regimen—she had already gone to the literature to familiarize herself with the drugs used to treat her son’s condition—he completely shut her down. The protocol was set, he told her, and he did not want to consider any modifications. That response, she said, was discouraging because it dismissed all of the research she had done proactively and discounted the initiative she had shown to learn more about the drugs her son would be taking. A better response, said Reed, would have been to say that her suggestion was interesting and that he would check it out.

Monson replied that she would like to be asked what she, as an individual, is experiencing that seems out of place, but that may or may not indicate something is wrong. For example, she said, she is very strict about her fluids compliance and is doing well with regard to the symptoms she would show if her disease was progressing. The result, she said, is that her clinician cuts her visits short without asking if something new is going on in her life. She noted that while her nursing background helps her notice symptoms not associated with her kidney disease that are likely related to the drugs she is taking, that is not true for most people. She suggested that people keep a diary to track how they feel throughout the day and of any unusual feelings or symptoms they are experiencing. They can then use that diary as a way of advocating for themselves with their physicians.

Sexton agreed that physicians should encourage their patients with chronic conditions to keep a journal, whether on paper or using an enabling

technology, as a means of creating a two-way flow of information that would ultimately help the physician respond to the specific needs of individual patients. He noted that when patients with life-altering chronic illnesses visit their physicians every few months, they are asked generic questions such as “What happened in the past 3 months?” Without some type of journal, few patients would be able to answer that question in any meaningful way. “It is critical that we have a better understanding of the context and lived experiences of our patients by being able to enable that kind of data capture and make it meaningful so that both the care provider and patient can better manage their care more effectively and more efficiently in ways that really look at what is going on in their life,” said Sexton. “Are they having dietary issues? Are they having more stress? What is going on outside of being in this room? What is outside of the medical record that we can pull up on our electronic health record (EHR) systems?” Sexton added that this type of patient-recorded information could help physicians identify side effect issues or life events that make compliance difficult.

Next, Parnell asked the panelists for their ideas on what clinicians can do to enhance communication, whether written or oral. One suggestion Reed had specific for kidney dialysis patients, which she heard from her son’s posttransplant coordinator, is for there to be multiple education sessions for patients during which they would gradually learn about their medications. Her son’s transplant coordinator told her that too many patients come to her unprepared to manage the multiple drugs they require after a transplant because the dialysis centers have previously taken care of everything and the patients never learn to take charge of their medications on their own. “By the time they get to [the coordinator], having got a kidney transplant, she finds that those patients are losing their organs or they are going into rejection simply because they are telling her that they cannot manage their medications. They do not know how to take them or when they should take them.” Parnell remarked that health literacy experts talk about conveying information in chunks, of giving them two or three key points and then building on those points. Reed agreed that type of approach would help patients take ownership of their particular situation and empower them to do even more down the road.

Monson suggested that everyone on the health care team needs to be proactive about being partners with their patients and encouraging them to ask questions and talk about what they are experiencing on a day-to-day basis. For example, as a 34-year-old when she was first diagnosed, she was still ovulating and the many medications she was taking were interfering with her menstrual cycle. She knew something was wrong, but because the majority of patients on dialysis are elderly, nobody at the dialysis center even thought to consider how the 14 drugs she was taking would affect her menstrual cycle. It was only through a close relationship she developed with

the pharmacist on her care team that the two of them were able to figure out what was happening and change how she was being treated. Now, she said, she is participating in four research studies aimed at understanding more about how the typical drug regimen for kidney dialysis patients interacts in a younger woman. What worries Monson is that not everyone can communicate as well as she can or has the background that she does to know to pay attention to things that seem out of the ordinary and report them to their care team members.

Reed noted a book, The Patient Will See You Now, that helped her communicate effectively with her son’s physicians. This book talks about how to set expectations and what to expect from care team members. “It was well worth reading in terms of communicating, trying to get your point across, and getting people to do what you want them to do,” said Reed.

For her final question to the panelists, Parnell asked them for one innovative solution to enhance medication communication. Both Reed and Monson nominated the need for funding to assist with medication and better information about different funding mechanisms. Reed, for example, worries that her 26-year-old son will lose Medicare coverage for his medications, which he needs to take for the rest of his life, after 36 months. Monson noted that every pharmaceutical company has options to help people with medication costs, but many people are not aware of those programs, and if they do know of them are intimidated to apply for assistance. She said that care team members need to do more to raise awareness of those assistance programs, other safety net programs, and even clinical trials that can help patients deal with the cost of their medications.

Sexton said one of the most fundamental and simple innovations would be to reframe the perspective of care providers when thinking about these long-term chronic conditions. Such a diagnosis means that patients will experience drastic changes in their lives. “It is a constant experience that has to be navigated,” said Sexton, and physicians need to think about the impact of that diagnosis as more than just something that triggers office visits, but rather as a journey. He believes that thinking of these conditions in that way will change the mindset of physicians and how they think about providing care for their patients.

Sexton also noted that he has been working on technology solutions that can enable better avenues of communication between patients and clinicians and increase providers’ understanding of what their patients’ lives are like and the experiences that have been associated with their medical conditions. The goal of such technology solutions, he said, should be to empower patients to do something meaningful in their lives and not feel that they are stuck in a terrifying situation through which they have to suffer alone. “Even if it is as simple as designing applications that allow you to just track your metabolism or your food diary, your sleep, or your

stress levels and be able to connect that back to your doctor’s EHR so that whenever you come back, it is no longer those 10 generic question or those 10 generic responses. It is very specific answers and very specific questions about instances and situations in your patient’s life, so you can better say, ‘Maybe we need to make a pivot. Maybe this medication is not working. Maybe we should try something new.’” Such applications, said Sexton, could help create a relationship and establish two-way communication so that treating chronic conditions becomes a partnership rather than a doctor-driven dictatorship.

Reed added that it is vitally important for EHR systems to be able to communicate with one another, particularly with regard to medications. Her son, for example, cannot list all of his medications on a medical alert identification bracelet. In Pittsburgh, where her son lives, there are two major medical systems that do not share medical records. “There has to be some sort of centralized network going forward so that no matter where you are, the information is accessible,” said Reed.

DISCUSSION

Terry Davis from the Louisiana State University Health Sciences Center began the discussion by recounting a story told by her research assistant, who said she was tired of the health care system thinking of her solely as a patient with type 1 diabetes who should be treated with the standard evidence-based treatment protocol and not as a 28-year-old who runs marathons, goes camping, and drinks beer with her friends. She then asked the panelists if they had any idea how to get clinicians to think beyond the standard treatment protocols and consider how individuals lead their lives. Monson replied that the only way she knows to accomplish this is for patients to take responsibility for letting their clinicians know they need to consider the human factor when developing treatment plans. “The human factor has to be the individualistic source of wellness,” said Monson, who considers herself a 36-year-old marathoner, triathlete, and personal trainer, not a kidney failure patient. “Everybody focuses on my failure, but what about the other elements of my life?” she said. At one point, she recalled, she had a catheter in her heart for 7 months and was immunocompromised. “I still had to take care of my family, be a nurse, raise a child, and be a woman. How can I do that? No one ever asked me about that.”

Sexton agreed with Monson and argued that while physicians have to be objective, they also need to be empathetic and aim to understand the individual, not just the patient. The best physicians consider their patients’ goals and aspirations and work with their patients to create care plans to get them where they want to be. Davis added that one thing physicians can

do to change their perspectives from patient to person is to ask a patient about their greatest fears, their issues, and their goals.

Jennifer Dillaha from the Arkansas Department of Health noted that many of the comments so far reflected something she observed in the early trials of drugs for HIV, which is that the factor that seemed to make the biggest different in terms of medication adherence was whether or not the patient perceived that people in the clinic cared about them. Given that, she asked the panelists if there were things they wished the people they interact with could do differently to better communicate empathy in a way that would influence how well they could adhere to their medication regimen. Reed said when she and her son went for their initial transplant evaluation, they endured an unbelievably long day in which they were overwhelmed with information. When she suggested afterward that it might be better if the transplant center could hold a series of mini-workshops at which potential patients and their caregivers could be given the same amount of information at a more reasonable pace and in a more interactive learning environment, she was shot down. Reed also noted that while her son’s experience at the dialysis center was largely positive, the experience of being on the transplant waiting list was “a horrendous experience” that involved interacting with five different transplant coordinators. “I think there has to be continuity and there has to be ongoing education as opposed to a one and done deal,” said Reed.

Ruth Parker from the Emory University School of Medicine asked the panelists for their thoughts on how digital technologies could be leveraged to get patients and their caregivers good, clear, actionable, health-literate information about medication. Reed has found social media, particularly Facebook, to be a starting point, although she has been unable to find any groups relating to her son’s illness and the medications he has to take. She commented that people on dialysis sit in a chair multiple times per week for hours at a time, usually watching television or surfing the Internet. “That would be a perfect opportunity or an access point for you to get the information out there and ask them questions,” said Reed. She also noted that some dialysis centers use a device that transmits data from a home dialysis unit to the center. Her son did not have access to that device, but it would have made her job and the clinic nurse manager’s job easier.

Sexton added that social networks are crucial sources of information. These networks can be in the form of forums run by national foundations or patient support groups on Facebook or Twitter, for example. “Those kinds of forums and those support groups are so mission critical because they give you a voice and an understanding that there are other people out there like you,” said Sexton. He commented that there are many digital tools and mobile phone apps available, but most are unable to integrate with an EHR system and thus cannot feed potentially useful information to

providers. This is doable, however, and he noted that all of the major EHR vendors are working to develop applications that will enable their systems to access third-party datasets. As an example, he said that Humana has developed smart scales that integrate with its EHR system so that clinicians can better manage and track weight loss, which has improved outcomes. The challenge going forward, said Sexton, is to create streamlined digital ecosystems in which different components of an EHR system can exchange data among themselves and with patient-generated data as a means of increasing access to information by both the patient and the patient’s care providers. Parker asked Sexton for his opinion on the use of interactive payment systems as a means of communicating about medications. Sexton said such systems are necessary and could be used to push reminders to patients and then feedback adherence data to the patient’s care providers. He noted that he uses a whiteboard on which he lists when he needs to take which medication as well as setting multiple reminders on his smartphone.

Jane Grover from the American Dental Association asked the panelists if their oral health providers were informed about their medical conditions and if their medical providers asked about their oral health status. Monson said the first symptoms of her kidneys failing—the result, she believes, of the 38 pills per day she had been taking 1.5 years prior to that to treat pregnancy-induced hypertension—was a bad taste in her mouth, which affected her desire to eat. While she neglected to mention this to her physician, she did tell her dentist, who could find nothing wrong with her. She learned some 3 months later, when diagnosed with kidney failure, that the bad taste in her mouth is one of the symptoms of kidney failure. She also noted how important oral health is for a person on dialysis given how critical diet is when undergoing dialysis.

As an aside, Monson commented that dialysis centers do not allow patients to post pictures on social media, but she thinks this is a bad policy because it perpetuates the dismal image of dialysis. “We are not encouraging the idea that you can be on dialysis and have a healthy attitude.”

Reed remarked that dental care was stressed throughout her son’s dialysis and transplant journey, and after her son received his transplant he was informed that he would have to take antibiotics prior to any dental procedure going forward. She noted that she and her husband are proactive parents who make sure that their son has regular dental appointments as well as an annual dermatology exam because of his elevated risk of developing skin cancers as a result of the medications he takes.

Laurie Francis from the Oregon Primary Care Association commented that the remarks so far point to the convergence of patient care, human-centered design, and health literacy, and their impact on medication compliance. She then asked how to incorporate patients’ lives, needs, strengths, resilience, and fears in the way the health care system approaches patients

at the time of first contact. “How would it look if we met you where you are with what you are wondering about and built your care with you around your goals instead of us constantly trying to tell you how we would like you to meet our goals?” she asked the panelists. Monson agreed that meeting her where she was—a mother of a 6-year-old and an unemployed nurse who could no longer afford her medications—instead of focusing on where the medical system needed her to be would have alleviated some of the enormous pressure she was under in the months after her diagnosis. In her case, her fiancé kept her going, prodding her to go to her appointments and keep a positive attitude. She now believes she needs to be the poster child for renal disease every day. Sexton added how important it is to get the message that life goes on during difficult times. He related how much he appreciated hearing from his dermatologist that there will be hard times coming because of the multiple medications he would be taking, but that if he took care of himself life would be meaningful and not all about his illness. “The psychological effects, the social effects are so critical,” said Sexton. “We miss the boat on that quite frequently.” Monson agreed, which is why she named her organization More Than Your Kidneys to reflect the fact that patients need to figure out what type of life they are going to live beyond their diagnosis and that they are likely to need help from outside of the medical system to do so because most physicians are not equipped to provide that kind of advice.

Reed said she would have liked to have had a roadmap to give her of what may happen on the journey ahead. Instead, she had to continually ask questions and set her own plan into action based on what might or might not happen. Two important steps, she said, are to explain to patients what can happen if they do not adhere to their medication regimen and how they will benefit when they stay on their plan.

Wilma Alvarado-Little from Alvarado-Little Consulting said what resonated with her from the panelists’ remarks was the issue of empowerment and advocating for oneself. She then asked the panelists if they had any advice for parents who have to advocate for their children. Reed replied that having a good support network is important when you have a child with a terrible disease and that there are support groups available that are geared specifically toward the parents of pediatric patients.

Robert Logan from the National Library of Medicine noted that there are medical centers in the United States that specialize in listening to a patient’s life and journey stories and embrace diverse comments as a foundation of patient-centered clinical care. Logan cited the Nuka System of Care model practiced by the Southcentral Foundation in Anchorage, Alaska,⁵ as an example of how innovative approaches to listening to patients also are

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⁵ See https://www.southcentralfoundation.com (accessed on March 31, 2017).

linked to clinical quality improvements. “Many of the things you discussed are definitely in place and are making significant clinical differences,” said Logan. “I wish those places (medical centers) were the model that was used throughout the United States and in other countries around the world.” Bernard Rosof concluded the discussion by recounting a comment that Donald Berwick, former administrator of the Centers for Medicare & Medicaid Services, made in a commencement address. Speaking to new graduates of Yale Medical School, Berwick told the graduates to take off their white coats and sit among their patients to get insights into what they really need to know. “That is what I think I heard today from the panel,” said Rosof. He added that while technology, data, and social media are important elements to caring for patients with complex illnesses, personal involvement, concern, and communication remain key elements.

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