Empowering patients is at the heart of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. With this in mind, PEN has taken on a new initiative for myeloproliferative neoplasms (MPNs), the MPN Empowering Providers to Empower Patients (EPEP) initiative. The program expands PEN’s reach to healthcare professionals with the goal to improve physician-patient communication; shared decision-making; and the role that MPN patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.
The EPEP initiative includes the following resources:
- Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
- EPEP Roundtables with Dr. Nicole Rochester and MPN experts Dr. Gabriela Hobbs and Natasha Johnson as they discuss a range of topics including how to help your MPN patients play an active role in managing their care, healthcare provider recommended strategies for managing disease burden, the importance of advanced practice clinicians on the MPN health care team, clinical trials and why it’s vital for nurses to address this topic with patients and families, and cultural humility in action.
- EPEP Resources provides the resource guide, infographics, blog, and other resources to improve patient care
- EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests efficiently to your inbox.
Key Takeaways to Help Empower MPN Patients
PEN had the opportunity to interview experts Dr. Gabriela Hobbs and Natasha Johnson to learn about some of their expertise. They shared their perspectives about vital ways that they work with patients to help empower them and to work toward the best personalized care for each patient.
The art of listening to patients is an essential part of empowering patients in their care journeys. Expert Dr. Gabriela Hobbs from Massachusetts General Hospital shared her perspective about listening. “…I think knowing where your patient is emotionally, what’s important to them, what are their worries, is really important, so you can have a conversation where you’re not just speaking about the things that you as a provider think is important, but really also listening to where the patient is coming from, and so that you can make sure that you’re appeasing their anxieties and whatever decision you make is consistent with both what you think is medically important, but also with what’s really important for the patients. I think listening is really at the core there.”
Of course, nurse practitioners often serve as valuable members of the MPN care team. As a nurse practitioner, Natasha Johnson shared her perspective in empowering MPN patients. “…I think that we spend a ton of time educating them to make sure that they really understand this disease, the symptoms that go along with it, the treatments that go along with that, and once we have a good confidence that they understand everything, lead them into discussing what their goals of care are, and then we take all that information together, and we create a treatment plan specific to that patient, really aiming to improve their quality of life and overall survival.”
Johnson also shared about the benefits of seeing an MPN specialist. “…I really think there’s a benefit to seeing an MPN expert that is at a national cancer center, academic center. I do think there is some more time allotted to those visits, especially the consults and first appointments for the patient, and we kind of start this with my doctor and other providers of assessing how much does the patient even know to begin with? So that can direct us where to start. And then how deep do they want to go.”
Helping to educate MPN patients, of course, can take a variety of different forms. Johnson explained some of the actions that she takes to help her patients. “…I write a lot of things down for my patients when I see them, I think visuals are really helpful, provide literature, I tell them what websites to visit. A lot of times, they just Google their doctor, which is great because they can find them and listen to their own lectures, and they really learn a lot. So just guiding them to those resources. I do think it’s important, too, to give them something like the total symptom score form. Just having that visual of, these are what is common, and then they can think about that between visits, but I think all of those things really help to educate them and get them involved.”
MPN Care Team Best Practices for Patients
Tracking symptoms and preparing for office visits are key tasks for MPN patients. Dr. Hobbs explained how essential these tasks are for patient empowerment. “…for those patients that are very symptomatic, for example, keeping track of their symptoms over time, writing down notes about how they felt, what they think made something better, made something worse, how they’re responding to these medications, questions that they may have, and writing all of that down helps them be more empowered patients. They can advocate for themselves in a more organized way when they do go see either me or another clinician. So they come in fully prepared with the information and the questions that they want to get out of that visit.”
Dr. Hobbs has experienced the value of the symptom assessment form. “I think clinicians are busy and sometimes feel like having a tool to ask those questions is maybe too burdensome. I personally find that the MPN symptom assessment form is a quick form, it’s easy to complete, it can be given to a patient, there’s a piece of paper while they’re waiting for you.”
And Dr. Hobbs shared the benefits she’s experienced with the use of the form. “And that also directs the conversation because it really just gives numbers, makes it objective, and then can really start that conversation. And so remembering that we do have this tool, it actually can help cut down time to the visit and make it more focused, and it’s helpful to…empowers the patient and make sure that you really are asking about all of those symptoms, and just making sure that you don’t just assume that a patient has or doesn’t have a symptom, but really saying, ‘Are there any other symptoms that you’ve noticed?’”
Dr. Hobbs has also witnessed the value of care partners being involved in MPN care conversations about symptoms. “…the spouse is like, ‘But remember, you really haven’t been having your dinner, and remember how you were complaining about how your stomach was hurting every time you ate. And you say you’re not itchy, but every night when we’re watching TV, I turn around and I see that you’re scratching.’ And so I think that’s also a really important tool to make sure that you make use of the family members, because they really know what’s going on if the patient is not willing to share as much or doesn’t like to complain.”
Advocacy for Cultural Humility
Cultural humility is a process of listening and learning about patients. Dr. Hobbs shared her perspective. “…there’s all sorts of history in this country, especially about clinical trials. And I think coming into those encounters, like I said at the beginning of our conversation, taking into account that you really do know your patient. But sometimes, you don’t know the patient as well. You’re getting to know them, and you need to make a decision. Just listening, being humble, being aware, trying to understand where the patient is coming from.”
Dr. Hobbs continued to share about taking this vital time to learn about your patients’ ways of thinking. “I think sometimes, especially when you’re trying to make a decision quickly and you find that there’s some friction, I think taking some time to say, ‘Alright, where is that coming from?’ And perhaps I’m coming across too strong with this recommendation to do this clinical trial and there’s maybe something that I need to explore, and so just keeping an open mind and trying to just ask questions, ‘Where are you coming from? What’s important to you? Why are you hesitating? Or is there something that I can explain in a different way?’”
Even though MPN treatments have experienced increases in quantity and efficacy of treatments, vital HCP best practices can go a long way in empowering MPN patients.How can you help your MPN patients play an active role in managing their care? How do we improve clinician-patient communication about symptoms? How should fellow MPN specialists explain disease progression to patients and care partners? We hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward equitable and culturally sensitive care for all MPN patients.