Becoming a Patient Care Advocate: A Guide for Healthcare Professionals
Healthcare can be daunting for anyone. But for those living with invisible chronic illnesses, the challenges are magnified.
Statistics show that nearly 50 million Americans suffer from chronic pain and invisible illnesses. And many of us struggle to have our symptoms taken seriously by healthcare professionals. This is what the role of a patient care advocate is all about.
A patient care advocate is a healthcare professional dedicated to ensuring patients' voices are heard, their needs are met, and their care is personalized.
And for patients with unseen conditions like ME/CFS, fibromyalgia, and chronic migraines, having a compassionate advocate makes all the difference in receiving the care they deserve.
In this guide, we'll explore what it means to be a patient care advocate, why this role is vital in our healthcare industry, and practical strategies for healthcare professionals to better support patients.
By the end, you’ll have a deeper understanding of how to become an effective patient care advocate, equipped with the tools you need to change your patients’ lives.
What is a Patient Care Advocate?
A patient care advocate is a healthcare professional or healthcare provider who supports and empowers patients. They make sure they receive the best possible care.
Here are the key roles and responsibilities of a patient advocate:
Listening and Understanding
They take the time to listen to patients’ concerns and symptoms. They understand their unique struggles, especially those with invisible chronic illnesses.
2. Bridging the Communication Gap
Patient advocates facilitate clear, effective communication between patients and healthcare providers. The goal is to make sure patients’ needs are heard and addressed.
3. Educating Patients
Another function of a health advocate is to provide patients with information about their conditions, treatment options, and healthcare rights. Helping them understand their diagnoses and care plans will empower them.
4. Navigating the Healthcare System
Patients often need help navigating complex healthcare systems and accessing necessary services. You can promote their needs within healthcare institutions, develop individualized care plans that cater to their circumstances, and advocate for flexible treatment options.
The Importance of Patient Care Advocacy
Anyone in the medical industry or living with a chronic illness knows this truth: there are gaps in effective care for people with invisible conditions.
Many struggle to communicate their symptoms to doctors, especially when symptoms can’t be seen. Sometimes, this leads to healthcare providers (physicians, nurses, NPs, and PAs) not taking their patients seriously.
Misdiagnoses are also common for those with invisible illnesses. Conditions like mine (ME/CFS) are complex, varied, and unpredictable. Healthcare providers might not always have the specialized knowledge or strategies to conduct thorough evaluations.
Healthcare professionals who become patient care advocates can help fill in these gaps.
How do they do this?
By facilitating transparent communication with the patient,
advocating for comprehensive assessments,
submitting referrals to specialists,
and supporting the patient through the process of starting an appropriate treatment plan.
How to Be an Advocate for Patients with Invisible Chronic Illnesses
Here are three strategies that will help you become an advocate for patients and develop your skills, especially for those living with invisible, relapsing chronic conditions.
Offer Virtual Appointments and Accommodations
Invisible conditions like ME/CFS and long COVID present with unpredictable symptoms and fluctuations. Unexpected flair-ups and post-exertional malaise (PEM) make traditional in-person doctor’s visits challenging.
In this case, virtual appointments and remote accommodations can be an excellent solution.
Benefits: Virtual appointments offer flexibility, and allow physicians to witness patients having a “bad” day or experiencing a crash. For physicians who have never witnessed this moment, it can completely transform the patient-physician partnership from this point on.
Implementation: Optimize sessions with secure telehealth platforms, flexible scheduling, and virtual assessment tools.
By offering virtual accommodations, healthcare providers can meet the individual needs of their patients managing an invisible chronic illness.
2. Implement ‘Wait and Observe’ Protocol for Witnessing Symptoms
The ‘Wait and Observe’ Protocol is a patient-centered approach for managing elusive symptoms that often come with conditions like ME/CFS, long COVID, Chron’s, and fibromyalgia.
To wait and observe is to systematically monitor patient symptoms at varying times (not regularly scheduled times) to identify patterns and triggers over longer blocks of time.
Benefits: The ‘Wait and Observe’ protocol helps clinicians avoid unnecessary interventions or misdiagnoses, and allows for more personalized treatment plans, because clinicians can see the bigger picture.
Implementation: Conduct a thorough initial assessment, start a symptom monitoring plan, collaborate with the patient on specific trigger points, and maintain open communication.
Practitioners can use the ‘Wait and Observe’ approach to deepen their understanding of illness progression and tailor care plans to individual experiences.
I’m a big advocate for the ‘Wait and Observe’ Protocol, and even teach it to healthcare teams in my keynote seminar. It can greatly improve the quality of care and life for those with invisible chronic diseases.
3. Provide Flexible Care Plans for Unpredictable Chronic Illnesses
Managing chronic illnesses that present with unpredictable symptoms requires healthcare providers to adopt flexible, patient-centered care strategies.
More flexible approaches will also empower patients to participate in their own healthcare journey.
Let’s explore ways you can implement a flexible care plan for your chronic illness patients.
Tailored Care Plans
Developing personalized care plans is the key to helping patients with unpredictable chronic illnesses.
These plans should be adaptable, evolving alongside changes in the patient's symptoms and lifestyle.
Effective management involves a thorough assessment and ongoing communication:
Personalization
Conduct a detailed assessment of the patient's medical history, symptoms, and daily challenges.
Tailor the care plan to address specific needs, and incorporate input from the patient to make it relevant. Remember: this is not a one-size-fits-all process.
2. Communication & Check-Ins
Establish regular communication channels like virtual portal messaging to monitor your patients’ conditions closely.
Check-ins at varying times throughout the month can help healthcare providers assess progress, observe symptoms, and adjust the care plan as needed.
Patient Advocate Certification and Training
Becoming a patient care advocate requires a holistic approach and dedication: leveling up your skills, strategies, assessment protocols, and interpersonal communication.
If you’re committed to strengthening your ability to advocate for your invisible chronic illness patients, consider pursuing specialized training programs or certifications that can help you become the best possible patient advocate.
Training Programs
Organizations like the Professional Patient Advocate Institute offer specific training programs tailored to patient advocacy. Programs cover topics like:
Healthcare navigation
Patient rights
Effective communication strategies
Certifications
Pursuing certifications in patient advocacy equips healthcare professionals with advanced skills in navigating complex healthcare systems and promoting patient-centered care.
Certifications will validate your expertise in understanding patient needs, advocating for healthcare access, and promoting informed decision-making.
Here are a couple of notable certifications to consider:
Skill Development for Patient Care Advocates
If you want to become a patient care advocate, training programs and certifications will cultivate these key qualities:
Empathy: Empathy plays a crucial role in patient-centered care. Understand patients' perspectives, emotions, and experiences.
Compassion: Practice active listening, validating patient concerns, and demonstrating empathy through non-verbal cues.
Effective Communication: Develop clear communication by using plain language to explain medical information, seek patient input in decision-making, and make sure patients understand treatment options and care plans.
Real-Life Story: I Needed An Advocate in my Corner (& Didn’t Have One)
Let me share a recent time when my healthcare provider should’ve been a proactive patient advocate for me. But instead, I didn’t receive that much-needed support.
Living with ME/CFS is a constant and unpredictable struggle. Flair-ups and infections can hit me out of the blue, making it hard to plan ahead or think clearly when I’m in the midst of the storm.
This past month was a good example.
Starting on a Monday, I suddenly came down with a bad fever. By Wednesday, I was experiencing full-blown aches and chills. Down for the count.
During this time, I had a previously scheduled annual wellness check-up with my primary care physician. But since I live alone, I knew I couldn’t get myself to the office so I canceled it on the portal.
Her response: “Okay, let me know If I can be of further help.”
By that Friday, my fever spiked to 103. Since the muscle aches had dissipated, I knew I could manage to make it down the street to an urgent care facility.
In the end, I got the care I needed. But it didn’t come from my primary care physician.
Being so sick prevented me from thinking clearly. And living alone, I desperately needed an advocate in my corner. An advocate to suggest a virtual appointment for me, so I could at least connect with my PCP and come up with a plan.
I’ll make sure to talk with my doctor about these things before the next crisis hits. An adaptive plan will help me feel less vulnerable and allow me to work with my PCP rather than resort to urgent care. The latter is a useful resource, but certainly not my first choice.
This is why patient care advocacy matters. YOU have the power to proactively find solutions for vulnerable individuals who need an expert’s guidance.
Let’s take the burden off the patient, and shoulder some of the decision-making.
Final Thoughts
Patient care advocacy is the key to unlocking the unique needs of individuals with invisible chronic disabilities. It transforms healthcare by turning empathy into action, ensuring that each patient's voice is heard and valued.
By understanding what a patient care advocate does, the importance of this work, and how to be an advocate for patients in real-world scenarios, you can effectively serve your patients and contribute to a more compassionate healthcare system.
I welcome you to join my keynote talk, “Witness What’s Invisible, Coordinating Clocks.” In this speech, I offer transformative strategies and insights into becoming the best patient advocate you can be.
I tailor this presentation for healthcare teams, clinicians, medical university departments, and others interested in invisible illness education. Learn more about it and apply here.
