You’re working remotely with a patient who needs advocacy. What tools can you use to help them?

The communication platform is important, but what I don’t see reflected here is a concept I believe is even more significant: health literacy. The definition of “personal health literacy” per the CDC is: …the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. An advocate must understand the health literacy of the individual and communicate in a way that is accessible to the patient and their family. Another layer to this is the growing bilingual and Spanish speaking population in the United States. Language barriers can result in diminished access to care and poor health outcomes.

This is probably the number one component of being a patient advocate. Effective communication is vital in our role. I find every individual and family I work with unique in how to best communicate with them. That is the beauty of our role. We don’t have only one or two ways to communicate with our clients and families. We can customize to their unique needs so they feel heard and in turn are receiving the information they need. This is probably one of the top areas I enjoy doing as a patient advocate communicating with clients, families, and health care providers.

Serving in the role of patient advocate has always been my calling. Every patient needs one, regardless of care setting. First, listen. What do they need? What have been their challenges in getting what they need? Next, provide resources specific to their geographic location. Set up a conference call with key resources to help them navigate our fragmented healthcare system. Review their insurance plan to help identify benefits such as case or disease management services. Together, set up a plan. Communicate at a mutually agreed upon cadence and help the patient focus on achievable goals that will help them get the services and care they need. Let them know you are in their corner. Establishing trust and rapport makes all the difference.

In the past, I’ve had to use a wide variety of communication platforms. While advocating for patients. When working with patients and caregivers, I prefer to meet in person. If we can’t, I like to use a communication platform that includes video, because I feel that is important for making a personal connection. Seeing a patient I’m advocating for can help me understand what their needs are. Too many times, people find it difficult to articulate their situation and video conferencing can help.

I don't personally think that tech solutions are the best way to communicate with a patient - not in today's environment - 20 years from now (maybe sooner) when people who are sick are of the age to be familiar with and comfortable with tech, sure, then... but today the vast majority of people who need advocacy are NOT comfortable with tech. PICK UP THE PHONE. The tech play should be on the advocates side - to keep track of all actions you have taken, to know what action is next to be taken (and when), to know the best in class care, and the best in class providers...but to think tech is the way to work with patients in today's world is not realistic IMHO

Working with and talking to 100s of families and patient advocates, I was fascinated as a nurse the methods by which they document to stay organized and the time spent keeping this story accurate. While nurses and doctors get EHRs, advocates get Excel, OneNote, Google Drives, binders, and notebooks. But, whoever begins the documentation is the keeper and how overwhelming it can be when a lot is changing and needs to be shared with many! I think advocates need to learn about and tap into new patient access laws that directly help them help their client pull the data directly out of the patient portal systems then organize it in an understandable, shareable way. As well, these apps and data stay with the individual and their family.

As someone who has Practiced Medicine in a rural area with limited resources I used to keep all the data written in customize books! Surprisingly it worked now I realize I can gather data in applications which are safe and follow the applicable laws.

More than ever - excellent, solid and through documentation with a patient/family is more than required and needed - it provides a platform of information that the advocate can then go back to as a reminder in regards to past or former conversations between the patient, a carer or the family. Records can be kept on any notes program on a PC, but I believe safety is key 🔑 in regards to personal information and a book of notes by the advocate, cannot be accessed by any hackers or online scammers who wish to access anything on your PC, whatsoever.

Make sure that these tools are HITECH level secure. and that you have Cyber Security coverage for protection. And consult with experts to help.

It is great to use documentation tools for patient advocacy because it helps advocates get a full picture of the journey of the patient to have all of that information integrated into one place. However, these tools need to be vetted and they must be extremely secure. This information is as vulnerable as it is valuable, and it needs to be cared for with the utmost respect for patient privacy and security.

There are no educational courses available (anywhere in the world) as far as I know to make one a 'consumer health advocate', except tiny, non-university courses by consumer organisations. Some advocates are educated in nursing previously and some are 'frequent flyer' consumers who are good communicators, empathetic for other patients. Some are both. In my case, I am an formally educated 'dental nurse' and a 'frequent flyer' patient of 17 years. I have educated myself on my own conditions by reading, reading and reading some more and reading peer reviewed medical journals, plus dependable websites, the best ones being Mayo Clinic and WebMD.

You can provide patients with both in person and online advocacy tools. Provide them with resources on organizations they can contact in their local neighborhoods and hospitals. You can also provide them with resources to non profits for their specific disease state.

Make sure you evaluate the literacy level and primary language of the patient to whom you are providing these resources and that you adjust your resources according to their needs.

The electronic healthcare record platforms such as Epic and Cerner have the option available for education to be pushed out to patients through their “My Education” type of tabs. This is massively underutilized in healthcare as hospitals continue to use paperwork as an option as well as be forced to pay additional dollars for this option. This should be a core component of every EHR and become industry standard so that patients can have access to their education, no matter where they seek their care.

La educación de nuestra parte para el paciente depende mucho del nivel de conocimientos y entendimiento del mismo. Debemos dejar de lado los tecnicismos para dar explicaciones, hacerlo de la manera más sencilla posible. Ahora que se abusa tanto del uso de las redes, podemos usarlo a nuestro favor; quizás haciendo contenido audiovisual que llame la atención.

Networking via online platforms like social groups or professional associations allows seeking advice and collaborating with experienced advocates. Always prioritize patient confidentiality, uphold ethical standards, and avoid conflicts of interest.

If one is a patient and not able to constantly meet up (in person) with other 'consumer health advocates' - often this can be facilitated and provided by a zoom chat, teams, or simply by phone. Many of us are distanced from each other over many kilometres or miles via harsh deserts 🏜 and via snowy ❄️ environments. So, meeting up is often too difficult - but supporting each other via socials can also help - most of us take to LinkedIn and Facebook - most of the other socials seem to be more teenage based or centred on singing and dancing 🕺which I'd rather not do to keep up with other advocates. However, a website for individuals really helps.

This past year I enjoyed more of the face to face networking. Online networking has been great yet there’s nothing like having a great conversation with someone face to face. I’m looking forward to 2024 and meeting new and old professional colleagues.

There are certain events/conference that should be "must attend" on your list. In addition, you should be board certified as a patient advocate, and you should "take advice" only from others who are proven successful in advocacy.

Self-care is vital for remote patient advocates. Online tools like mindfulness apps or counseling help manage stress. Set boundaries and seek professional help if needed, ensuring balance between advocacy and personal well-being.

As an independent nurse patient advocate I enjoy connecting with other advocates who are doing similar work as me. I always enjoyed connecting with others in previous jobs I had. When transitioning from the hospital to owning my own nursing advocacy business this was one aspect I missed the community. Fast forward 8 years as a nurse patient advocate it’s the community of other advocates I have around me that support me and in turn provides me the self care that I’m not in this all alone.

If one is a patient themselves, which I am - little scares me or worries me, I've seen it all and heard it all. I'd be silly to take one highly stressful cases or highly problematic cases. Yes, the writer above is on the right ✅️ key - whether we're an 'consumer health advocate' or any other job or simply a health consumer, looking after ourselves, being in touch with our doctors and seeing them regularly is an important part of looking after ourselves. This includes looking after one's mental health. It's true that taking on the problems of another can make burn 🔥 out - which is why many priests and pastors cannot do their jobs for long, but then many continue on for years.

In today’s world of instant access, social media and other apps it’s difficult to unplug and set boundaries on your own time and mental health. Setting communication boundaries for yourself and being mindful of being friendly vs being friends when using chat apps or social media communication can help with your well-being.

First off, I don't believe the phrase "vicarious trauma" is an accurate or appropriate term. People who seek the help of an advocate are by definition; challenged, unwell, and/or this brings inevitable stress. Dealing with pain and suffering either physically, emotionally or mentally - is stressful. Bringing our abilities to show and give compassion, empathy and understanding - doesn't make us immune from feeling. As professionals we are at the core - "people." Simply put we embrace our patients experience, stories, stress and, yes, trauma. It's how we deal with them that is important. Making time for self compassion, selflessness, and the awareness of our own needs is vital for our success and theirs. Take care of yourself!

I agree but, would like to add educating the remote patient on the importance of being an empowered and engaged patient is an excellent way in which to ensure better health outcomes. Following the goals of ensuring that your remote patient is educated, empowered, and engaged will result in a win/win outcome for the patient and the advocate.

In my opinion, one of the most important things we can do as an advocate is teach other people to advocate for themselves. The understanding of why knowledge is power is truly key in this process. We now live in an age of information overload. Sifting through and pulling apart what information is good and credible versus not , is sometimes a difficult and overwhelming process for the patients that you work with. So the teaching aspect of being an advocate, I believe, is one of the most important parts of the process. we talk about empowering people a lot. The process by which that empowerment is developed is a great importance.

Also consider connecting the patient or patient family with other organizations like Patients Rising and the EveryLife Foundation. These organizations invite patients to participate in advocacy and guide them each step of the way.

As an elder advocate, I receive calls from across the country all the time regarding hospital discharges, nursing home placements, and threats of eviction from nursing homes. I do a quick needs assessment by phone or Zoom. I inform the client to let the facility know that I'm representing the family and that they are to communicate with me. I then deal with the facility and/or the regulatory agency and resolve the problem.

Completely agree with this observation: ‘While nurses and doctors get EHRs, advocates get Excel, OneNote, Google Drives, binders, and notebooks.’ This is precisely what we’ve solving for at Fold Health - the first platform to enable collaborative care team success. We’d welcome this groups feedback on what we’re doing to help you optimize and scale the incredibly important work your doing that we believe makes it breaks patient outcomes and plan design success. mlubin@fold.health.