Brian Price, Susan M. Johnson, Jessica Burris, David Walter, Jennifer E. Dorand, And Nicholas Uzl.

 

We are a group of six adult Inflammatory bowel disease (IBD) patients who serve as the Patient Governance Committee for CCFA Partners – a patient powered research network that assists IBD patients, researchers, and healthcare providers to partner in finding the answers to questions patients care about and improving the health and lives of patients living with these conditions. To find out more about us, please visit our website at https://ccfa.med.unc.edu/ or send an email to [email protected].

monkeybusinessimages/Thinkstock

The foundation of good quality of care is the patient/physician relationship; and as patients we understand that foundation must be based on mutual respect, trust, and communication. There are a few themes that emerge when thinking about these salient qualities:
 

Open communication between patient and physician

Perhaps the single most important quality of a physician is a willingness to listen. IBD patients often don’t feel like they are being heard. Starting with a conversation about the patient’s goals in terms of managing the disease as well as their goals in life will help the physician understand the patient’s unique situation and concerns. This is really a twofold proposition: what are the patient’s short-term and long-term goals? What is the most effective treatment plan to help them? How do the physician and the patient define treatment success?

Sometimes the most effective treatment strategy isn’t the one that will improve overall quality of life. For example, adding immunomodulators to a biologic therapy may potentially increase the effectiveness or prolong treatment success; yet the adverse effects of immunomodulators on quality of life could outweigh any therapeutic benefits. Doctors should educate patients on the pros and cons of appropriate treatments, and should serve as a guide toward those plans that will have the most positive impact on overall well-being, as opposed to adopting a narrow focus on treating symptoms. We use the term “guide” with a very specific intent: if a patient comes to an appointment asking about a potential therapy, the doctor should take the time to discuss the topic with an open mind and help critically assess any potential benefits or hazards. The ability to guide treatments without dictating options or being closed minded requires a certain finesse.

At times, physicians and patients might disagree on treatment goals and patients will want their decisions respected, even if they differ from the physician’s preference. Patients want the ability to be unreservedly open with their doctors and for their doctors to listen without being defensive. Having a chronic, incurable illness is a lifelong journey, and they need someone who will respect their autonomy as well as help them weather the ups and downs of a life with IBD.

Another key consideration in building trust with patients is honesty. Being clear about the prognosis of the disease, the side effects of particular therapies, and how quickly to expect symptom relief and/or remission are all critical in empowering patients to be active participants in their disease management. Beyond the technical aspects of caring for a patient, the physician should also be honest about their capacity to care for the patient’s disease complexity and be able to devote the necessary time to developing a treatment strategy. This can be an issue especially in smaller towns, where some gastroenterologists who practice in a more generalist setting may be uncomfortable with therapy management that is outside the typical treatment algorithms. In those settings, it is highly appreciated when practitioners recommend second opinions or provide referrals.
 

Coordinating care and transitions

Ensuring coordinated care when making a transition – whether it is because of a geographic relocation, from pediatric care to adult, or a change in insurance – remains critical. While effective communication with patients is always important, it is especially so during a transition. It is valuable when physicians can work in a coordinated effort to manage care as a team. Patients are not always able to travel to a specialist or get an appointment every time treatments need reconsideration. The ability to access coordinated, specialized care in the local setting is very important. In recent years, the ability to seek medical advice via email check-ins (without the delay of office appointments) has become a tremendous value as diseases can sometimes flare out of control quickly and unpredictably.

When a patient needs to transfer to a new physician it’s important to help them find the right fit for their particular circumstances. Ask what is most important to patients. Is it the distance between their residence and their provider? Is it ability to manage complex disease? Is the physician in-network? All of these are important factors in helping the patient find the right care.

These considerations are not limited to times of transition. Despite advancements in electronic medical record systems, there continues to be poor documentation and communication between providers. Often, when patients initiate care with a new physician, that physician has not reviewed the medical history in depth and relies on the patient’s explanation. This kind of communication carries with it a risk of important findings from another doctor falling through the cracks.
 

 

Holistic approach to treatment

Treating an IBD patient means treating the patient as a whole, not only their symptoms. IBD can lead to many challenges for patients and that is why treatment plans must consider not only physical, but also emotional and mental health, needs. One underserved area is pain management. While the dangers of opiates have been well documented, it seems the pendulum has swung too far in the opposite direction: some doctors are ignoring the topic of pain management altogether or establishing policies against prescribing any narcotic pain medications. This trend is troubling. Pain management is not an issue that goes away by ignoring it and remains a very important part of overall care needs. Doctors should be encouraged to take the time to learn about the many different approaches to pain management, including nonnarcotic and nonmedication therapies.

There are so many concerns that patients have beyond IBD symptom management, but a compassionate approach and asking the right questions can immeasurably improve outcomes. Engaging with patients on the topic of navigating the 21st century American medical system – and the time, energy, and expense inherent to being a patient in that system – can help foster an appreciation for the myriad challenges patients face.
 

Conclusion

The mark of a high-functioning patient/physician relationship is that the patient feels empowered to be engaged with the management of their disease. An empowered patient is one who feels comfortable asking about new therapeutic options, explores new approaches to managing their disease without fear of being judged, and sticks with a treatment plan. By treating patients as partners in the fight against IBD, you can help patients accomplish their goals through a relationship based on mutual trust.

As a final note, we want to express our deepest thanks to gastroenterologists for the work that they do. Learning to manage IBD has been very challenging and the support and guidance of our doctors over the years has been so important. Thank you for choosing a career in helping people.
 

Patient Accounts

Since my diagnosis 15 years ago, the gastroenterologists who have cared for me were all effective clinicians who improved my quality of life. However, the best physicians asked me directly what aspects of my life I found most important.

My answer to this “life priority” question has changed over time. As a teenager, I wanted to fit in with my peer group as much as I could. In my early 20s, I wanted to take part in physical activity and reduce my pain as much as possible. Today, I prioritize being mentally sharp and reliable for those who depend on me professionally and maintaining empathy for those who depend on me emotionally.

I can imagine that my priorities are more easily relatable to an adult physician now than when I was in my teens, but the best gastroenterologists have empathetically listened and respected my wishes, within reason, throughout my entire experience of illness.

To me, what makes an excellent gastroenterologist is the ability to understand a patient’s greatest priorities, the activities or feelings or connections that make that person feel most whole, and, whenever possible, to direct treatment strategy according to these priorities.

– Jessica Burris
 

As young physicians, you may feel the need to know the answers to all our questions or a thorny diagnostic problem we present. The truth is we don’t expect you to know all the answers in the moment, it’s OK to stay you don’t know, but stay curious in finding a solution.

Also, at times there is a third presence in the room with you and your patient: the electronic medical record. It can be easy to become distracted and not make eye contact with us, which can seem as if you aren’t paying attention. Remember to always be fully present with your patient. Your patient will truly appreciate it.

– David Walter
 

 

We are a group of six adult Inflammatory bowel disease (IBD) patients who serve as the Patient Governance Committee for CCFA Partners – a patient powered research network that assists IBD patients, researchers, and healthcare providers to partner in finding the answers to questions patients care about and improving the health and lives of patients living with these conditions. To find out more about us, please visit our website at https://ccfa.med.unc.edu/ or send an email to [email protected].

monkeybusinessimages/Thinkstock

The foundation of good quality of care is the patient/physician relationship; and as patients we understand that foundation must be based on mutual respect, trust, and communication. There are a few themes that emerge when thinking about these salient qualities:
 

Open communication between patient and physician

Perhaps the single most important quality of a physician is a willingness to listen. IBD patients often don’t feel like they are being heard. Starting with a conversation about the patient’s goals in terms of managing the disease as well as their goals in life will help the physician understand the patient’s unique situation and concerns. This is really a twofold proposition: what are the patient’s short-term and long-term goals? What is the most effective treatment plan to help them? How do the physician and the patient define treatment success?

Sometimes the most effective treatment strategy isn’t the one that will improve overall quality of life. For example, adding immunomodulators to a biologic therapy may potentially increase the effectiveness or prolong treatment success; yet the adverse effects of immunomodulators on quality of life could outweigh any therapeutic benefits. Doctors should educate patients on the pros and cons of appropriate treatments, and should serve as a guide toward those plans that will have the most positive impact on overall well-being, as opposed to adopting a narrow focus on treating symptoms. We use the term “guide” with a very specific intent: if a patient comes to an appointment asking about a potential therapy, the doctor should take the time to discuss the topic with an open mind and help critically assess any potential benefits or hazards. The ability to guide treatments without dictating options or being closed minded requires a certain finesse.

At times, physicians and patients might disagree on treatment goals and patients will want their decisions respected, even if they differ from the physician’s preference. Patients want the ability to be unreservedly open with their doctors and for their doctors to listen without being defensive. Having a chronic, incurable illness is a lifelong journey, and they need someone who will respect their autonomy as well as help them weather the ups and downs of a life with IBD.

Another key consideration in building trust with patients is honesty. Being clear about the prognosis of the disease, the side effects of particular therapies, and how quickly to expect symptom relief and/or remission are all critical in empowering patients to be active participants in their disease management. Beyond the technical aspects of caring for a patient, the physician should also be honest about their capacity to care for the patient’s disease complexity and be able to devote the necessary time to developing a treatment strategy. This can be an issue especially in smaller towns, where some gastroenterologists who practice in a more generalist setting may be uncomfortable with therapy management that is outside the typical treatment algorithms. In those settings, it is highly appreciated when practitioners recommend second opinions or provide referrals.
 

Coordinating care and transitions

Ensuring coordinated care when making a transition – whether it is because of a geographic relocation, from pediatric care to adult, or a change in insurance – remains critical. While effective communication with patients is always important, it is especially so during a transition. It is valuable when physicians can work in a coordinated effort to manage care as a team. Patients are not always able to travel to a specialist or get an appointment every time treatments need reconsideration. The ability to access coordinated, specialized care in the local setting is very important. In recent years, the ability to seek medical advice via email check-ins (without the delay of office appointments) has become a tremendous value as diseases can sometimes flare out of control quickly and unpredictably.

When a patient needs to transfer to a new physician it’s important to help them find the right fit for their particular circumstances. Ask what is most important to patients. Is it the distance between their residence and their provider? Is it ability to manage complex disease? Is the physician in-network? All of these are important factors in helping the patient find the right care.

These considerations are not limited to times of transition. Despite advancements in electronic medical record systems, there continues to be poor documentation and communication between providers. Often, when patients initiate care with a new physician, that physician has not reviewed the medical history in depth and relies on the patient’s explanation. This kind of communication carries with it a risk of important findings from another doctor falling through the cracks.
 

 

Holistic approach to treatment

Treating an IBD patient means treating the patient as a whole, not only their symptoms. IBD can lead to many challenges for patients and that is why treatment plans must consider not only physical, but also emotional and mental health, needs. One underserved area is pain management. While the dangers of opiates have been well documented, it seems the pendulum has swung too far in the opposite direction: some doctors are ignoring the topic of pain management altogether or establishing policies against prescribing any narcotic pain medications. This trend is troubling. Pain management is not an issue that goes away by ignoring it and remains a very important part of overall care needs. Doctors should be encouraged to take the time to learn about the many different approaches to pain management, including nonnarcotic and nonmedication therapies.

There are so many concerns that patients have beyond IBD symptom management, but a compassionate approach and asking the right questions can immeasurably improve outcomes. Engaging with patients on the topic of navigating the 21st century American medical system – and the time, energy, and expense inherent to being a patient in that system – can help foster an appreciation for the myriad challenges patients face.
 

Conclusion

The mark of a high-functioning patient/physician relationship is that the patient feels empowered to be engaged with the management of their disease. An empowered patient is one who feels comfortable asking about new therapeutic options, explores new approaches to managing their disease without fear of being judged, and sticks with a treatment plan. By treating patients as partners in the fight against IBD, you can help patients accomplish their goals through a relationship based on mutual trust.

As a final note, we want to express our deepest thanks to gastroenterologists for the work that they do. Learning to manage IBD has been very challenging and the support and guidance of our doctors over the years has been so important. Thank you for choosing a career in helping people.
 

Patient Accounts

Since my diagnosis 15 years ago, the gastroenterologists who have cared for me were all effective clinicians who improved my quality of life. However, the best physicians asked me directly what aspects of my life I found most important.

My answer to this “life priority” question has changed over time. As a teenager, I wanted to fit in with my peer group as much as I could. In my early 20s, I wanted to take part in physical activity and reduce my pain as much as possible. Today, I prioritize being mentally sharp and reliable for those who depend on me professionally and maintaining empathy for those who depend on me emotionally.

I can imagine that my priorities are more easily relatable to an adult physician now than when I was in my teens, but the best gastroenterologists have empathetically listened and respected my wishes, within reason, throughout my entire experience of illness.

To me, what makes an excellent gastroenterologist is the ability to understand a patient’s greatest priorities, the activities or feelings or connections that make that person feel most whole, and, whenever possible, to direct treatment strategy according to these priorities.

– Jessica Burris
 

As young physicians, you may feel the need to know the answers to all our questions or a thorny diagnostic problem we present. The truth is we don’t expect you to know all the answers in the moment, it’s OK to stay you don’t know, but stay curious in finding a solution.

Also, at times there is a third presence in the room with you and your patient: the electronic medical record. It can be easy to become distracted and not make eye contact with us, which can seem as if you aren’t paying attention. Remember to always be fully present with your patient. Your patient will truly appreciate it.

– David Walter
 

 

We are a group of six adult Inflammatory bowel disease (IBD) patients who serve as the Patient Governance Committee for CCFA Partners – a patient powered research network that assists IBD patients, researchers, and healthcare providers to partner in finding the answers to questions patients care about and improving the health and lives of patients living with these conditions. To find out more about us, please visit our website at https://ccfa.med.unc.edu/ or send an email to [email protected].

monkeybusinessimages/Thinkstock

The foundation of good quality of care is the patient/physician relationship; and as patients we understand that foundation must be based on mutual respect, trust, and communication. There are a few themes that emerge when thinking about these salient qualities:
 

Open communication between patient and physician

Perhaps the single most important quality of a physician is a willingness to listen. IBD patients often don’t feel like they are being heard. Starting with a conversation about the patient’s goals in terms of managing the disease as well as their goals in life will help the physician understand the patient’s unique situation and concerns. This is really a twofold proposition: what are the patient’s short-term and long-term goals? What is the most effective treatment plan to help them? How do the physician and the patient define treatment success?

Sometimes the most effective treatment strategy isn’t the one that will improve overall quality of life. For example, adding immunomodulators to a biologic therapy may potentially increase the effectiveness or prolong treatment success; yet the adverse effects of immunomodulators on quality of life could outweigh any therapeutic benefits. Doctors should educate patients on the pros and cons of appropriate treatments, and should serve as a guide toward those plans that will have the most positive impact on overall well-being, as opposed to adopting a narrow focus on treating symptoms. We use the term “guide” with a very specific intent: if a patient comes to an appointment asking about a potential therapy, the doctor should take the time to discuss the topic with an open mind and help critically assess any potential benefits or hazards. The ability to guide treatments without dictating options or being closed minded requires a certain finesse.

At times, physicians and patients might disagree on treatment goals and patients will want their decisions respected, even if they differ from the physician’s preference. Patients want the ability to be unreservedly open with their doctors and for their doctors to listen without being defensive. Having a chronic, incurable illness is a lifelong journey, and they need someone who will respect their autonomy as well as help them weather the ups and downs of a life with IBD.

Another key consideration in building trust with patients is honesty. Being clear about the prognosis of the disease, the side effects of particular therapies, and how quickly to expect symptom relief and/or remission are all critical in empowering patients to be active participants in their disease management. Beyond the technical aspects of caring for a patient, the physician should also be honest about their capacity to care for the patient’s disease complexity and be able to devote the necessary time to developing a treatment strategy. This can be an issue especially in smaller towns, where some gastroenterologists who practice in a more generalist setting may be uncomfortable with therapy management that is outside the typical treatment algorithms. In those settings, it is highly appreciated when practitioners recommend second opinions or provide referrals.
 

Coordinating care and transitions

Ensuring coordinated care when making a transition – whether it is because of a geographic relocation, from pediatric care to adult, or a change in insurance – remains critical. While effective communication with patients is always important, it is especially so during a transition. It is valuable when physicians can work in a coordinated effort to manage care as a team. Patients are not always able to travel to a specialist or get an appointment every time treatments need reconsideration. The ability to access coordinated, specialized care in the local setting is very important. In recent years, the ability to seek medical advice via email check-ins (without the delay of office appointments) has become a tremendous value as diseases can sometimes flare out of control quickly and unpredictably.

When a patient needs to transfer to a new physician it’s important to help them find the right fit for their particular circumstances. Ask what is most important to patients. Is it the distance between their residence and their provider? Is it ability to manage complex disease? Is the physician in-network? All of these are important factors in helping the patient find the right care.

These considerations are not limited to times of transition. Despite advancements in electronic medical record systems, there continues to be poor documentation and communication between providers. Often, when patients initiate care with a new physician, that physician has not reviewed the medical history in depth and relies on the patient’s explanation. This kind of communication carries with it a risk of important findings from another doctor falling through the cracks.
 

 

Holistic approach to treatment

Treating an IBD patient means treating the patient as a whole, not only their symptoms. IBD can lead to many challenges for patients and that is why treatment plans must consider not only physical, but also emotional and mental health, needs. One underserved area is pain management. While the dangers of opiates have been well documented, it seems the pendulum has swung too far in the opposite direction: some doctors are ignoring the topic of pain management altogether or establishing policies against prescribing any narcotic pain medications. This trend is troubling. Pain management is not an issue that goes away by ignoring it and remains a very important part of overall care needs. Doctors should be encouraged to take the time to learn about the many different approaches to pain management, including nonnarcotic and nonmedication therapies.

There are so many concerns that patients have beyond IBD symptom management, but a compassionate approach and asking the right questions can immeasurably improve outcomes. Engaging with patients on the topic of navigating the 21st century American medical system – and the time, energy, and expense inherent to being a patient in that system – can help foster an appreciation for the myriad challenges patients face.
 

Conclusion

The mark of a high-functioning patient/physician relationship is that the patient feels empowered to be engaged with the management of their disease. An empowered patient is one who feels comfortable asking about new therapeutic options, explores new approaches to managing their disease without fear of being judged, and sticks with a treatment plan. By treating patients as partners in the fight against IBD, you can help patients accomplish their goals through a relationship based on mutual trust.

As a final note, we want to express our deepest thanks to gastroenterologists for the work that they do. Learning to manage IBD has been very challenging and the support and guidance of our doctors over the years has been so important. Thank you for choosing a career in helping people.
 

Patient Accounts

Since my diagnosis 15 years ago, the gastroenterologists who have cared for me were all effective clinicians who improved my quality of life. However, the best physicians asked me directly what aspects of my life I found most important.

My answer to this “life priority” question has changed over time. As a teenager, I wanted to fit in with my peer group as much as I could. In my early 20s, I wanted to take part in physical activity and reduce my pain as much as possible. Today, I prioritize being mentally sharp and reliable for those who depend on me professionally and maintaining empathy for those who depend on me emotionally.

I can imagine that my priorities are more easily relatable to an adult physician now than when I was in my teens, but the best gastroenterologists have empathetically listened and respected my wishes, within reason, throughout my entire experience of illness.

To me, what makes an excellent gastroenterologist is the ability to understand a patient’s greatest priorities, the activities or feelings or connections that make that person feel most whole, and, whenever possible, to direct treatment strategy according to these priorities.

– Jessica Burris
 

As young physicians, you may feel the need to know the answers to all our questions or a thorny diagnostic problem we present. The truth is we don’t expect you to know all the answers in the moment, it’s OK to stay you don’t know, but stay curious in finding a solution.

Also, at times there is a third presence in the room with you and your patient: the electronic medical record. It can be easy to become distracted and not make eye contact with us, which can seem as if you aren’t paying attention. Remember to always be fully present with your patient. Your patient will truly appreciate it.

– David Walter