Career profile: Patient advocates aka health advocates
In the United States, the healthcare system is complicated and confusing. People who are sick may find it difficult to navigate effectively the confusing and frustrating system to get the care they need. Family members and friends may try to help, but they often become overwhelmed as well. Because of this sad reality, patient advocates are starting businesses to offer services to give advice and guide patients through the healthcare system.
To learn more about the health advocacy profession, I interviewed three patient advocates: Linda Adler (LA), Jacqueline O'Doherty (JO), and Trisha Torrey (TT). They have years of experience and much wisdom to share.
How do patient advocates help people?
LA: We empower patients and their loved ones to navigate the intricacies of the healthcare system by providing what we call "fast advocacy," a relatively short and inexpensive set of targeted services. We also provide extended advocacy for clients who need more assistance, working side by side with patients and their loved ones every step of the way, throughout diagnosis and treatment.
JO: We educate newly diagnosed individuals and their families; coordinate healthcare among multiple doctors and caregivers; attend medical visits with patients and ask the questions that need to be answered; help families understand acute and subacute rehabilitation, skilled nursing facilities, home care, and long-term care options; and focus on the business of healthcare so you and your family can focus on being healthy.
TT: Like guide dogs and watchdogs, health and patient advocates and navigators protect patients and keep them safe. They prevent problems or fix problems, hold providers' toes to the fire, coordinate care, and make sure the care the patients do receive doesn't create a financial tailspin for them.
Shouldn't the health care system itself provide this service? Are patient advocates often employees of hospitals?
LA: The opportunities are far greater for people who start their own businesses than for people looking to land employment as a health advocate within the healthcare system.
JO: There aren't many good salaried jobs in this field. You have to be willing to start your own business.
TT: In hospitals and health insurance companies and other health-oriented employers, there are jobs that use the title "Patient Advocate." In reality, these are customer service jobs, not true advocacy jobs, because there is a huge conflict-of-interest factor. A person's allegiance is to whomever pays the advocate. If you truly want to be a patient advocate, you have to be independent.
What is your educational and professional background?
LA: In addition to building and running a patient advocacy business, my educational background includes completion of an MPH in Health Education and an MA in Communication Research. I have deep expertise in the healthcare field, and I teach healthcare advocacy at UC Berkeley.
JO: While working in medical device sales, I saw the need for patient advocacy as I observed how patients were affected by the challenges of the healthcare system. To specialize in patient advocacy, I completed a one-year online patient advocacy certification through the University of Miami.
TT: I am a former teacher who became interested in patient advocacy after being misdiagnosed with cancer. It was a horrible experience, but I have transformed it into good for others. I built a health advocacy career around writing, speaking, and building collaboration between patients, caregivers, patient advocates, and providers.
How do patient advocates get started?
LA: The first thing is going to be learning business skills. It takes time to build a business. Patient advocacy has the additional challenge that most people aren't going to understand what you do. Education is a huge part of helping people understand this profession.
JO: Read Trisha Torrey's book So You Want to Be a Patient Advocate? and make a business plan.
TO: Read my book and then, if you like what you've read, join the Alliance of Professional Health Advocates (APHA)." APHA provides resources to help advocates launch and grow their businesses.
Do patient advocates need to be certified?
LA: You are going to find different opinions on this. I am not a fan of credentialing because the field doesn't yet know what is being credentialed. Some of the best advocates prove their education and experience by the quality of their work.
JO: I do think certification is absolutely necessary. People need a basic foundation of knowledge. I also think a college degree is helpful as a minimum.
TT: I think there are benefits to certification and I am involved in the development of a patient advocate certification.
What is the most challenging part of this profession?
LA: There are many challenges. First, advocacy is unique and can be difficult to market. Second, people don't seek out advocates until they are in a medical crisis, so instead of working in a proactive way, advocates are called to help out in the middle of a potentially life-threatening emergency. If you are always working in a crisis with people who are experiencing tremendous stress, it can lead to burnout. Third, there are often patients with emotional issues or low communication skills, and there is a correlation between people who need a lot and people who cannot pay much. Any business owner has to find a way to be helpful but also to get paid. People do well in healthcare advocacy when they are willing to do a lot of care coordination and management. There's nothing sexy or fun about case management, but that's where the money is.
JO: People may not realize how much care coordination is involved. I do what it takes to get the job done. I place caregivers, oversee them, hire and fire, deal with rehab, and sometimes I stop at a store to get clothes or a space heater because that's what that patient needs. I love my job and I put 60-65 hours per week into it. This is not the business for someone who doesn't ever want to be hands on and you definitely need to like people to be a good patient advocate.
TT: First, you have to educate people about what a health advocate is and why you would even need one. Second, you have to convince people that you are the right health advocate. To make it all more difficult, people don't think about any of this until they need medical help and by then, they are in a crisis situation. Another challenge is that people come to this career path from established careers where a lot of support functions were done for them. Suddenly, as a business owner, you have to do everything yourself or hire support staff and there is a huge learning curve. When you get started, for the first couple of years, your work is more about building and running a business than about doing health advocacy. In the first year, it is 80% about running a business and 20% advocacy. By the third year, it is 50-50. It is like a pizza shop. Every pizza shop thinks they make great pizza. But the business of running the business is what determines if the store survives.
How much can a health advocate earn and in what timeframe?
LA: You have to figure out a way to monetize your business and you have to do it in a way that gives you the income you need. First, determine what you need. Then figure out how to meet those goals. If this is your Third Act and you just need some post-retirement income, that's different from being in the prime of your career and needing a high income. Most advocates do not pay the rent by doing this work, but some do. This isn't the type of business to start if you need to earn income immediately to pay the mortgage. As a rough guideline, I'd say that one year from the time you start, you can reliably earn income.
JO: It took me two years of working to build my business before I earned enough to live on. Until then, I used savings.
TT: A private health advocate, in business as one person, after two to three years of business, should be able to generate $150,000 or more per year in revenue. The highest number I've heard is just over $500,000 for one person. But remember that this is gross revenue and from that number, you have to subtract expenses to calculate profit. And to get to this level, you have to be an effective marketer and business person. If you aren't, you can either learn the skills to get there or you will earn much less. A lot of health advocates don't like to ask for money, but if you don't, your business will be short-lived. Three out of five businesses fail, and this is one reason why.
Since this is not a well-known service, how do patient advocates market their businesses?
LA: A niche makes it easier to market. Get very, very specific. For example, transgender patients who want to explore surgical options. It isn't specific enough to just say patients who have a traumatic brain injury or patients with a cancer diagnosis. Try to be the only person in the market who does something specific. You can partner with people who have different specialties than you do. Join APHA and take some marketing workshops taught by Trisha.
JO: I do a lot of networking. My main source of business is referrals. I give presentations and I have been featured in newspaper articles, which have been great for building my business. I've spoken to senior groups, churches, and women's clubs. When I speak, I make sure it is educational, not sales oriented.
TT: I teach entire workshops on this. Constant marketing is necessary. You can't just write one article or blog post. People have to be exposed over and over again to the concept of patient advocacy so that when they are diagnosed or a family member is, they remember you and that you can help. Build a website, establish a monthly newsletter, do public speaking (Rotary Club, Lion's Club, Senior Centers). Don't talk about patient advocacy but choose a topic like, "How to Stay Safe at the Hospital," or "How to Ask Your Doctor Questions." Weave the concept of patient advocacy into the presentation. Collect email addresses. Do 1-2 talks per month. You might be adding 20-40 people per month to your newsletter list. The newsletter has to give people practical information that convinces them to stay on the newsletter. Don't flood them with information.
Are there any hot niches that patient advocates should consider?
LA: Medical billing. You have to know about medical coding, but if someone wants to earn a quick income, a medical billing service might be a good place to start.
JO: Anything involving care planning and coordination. Doctors don't communicate well and they usually aren't on the same page. Communication is the biggest part of this job. Also, rural areas need patient advocates as the coasts are more saturated.
TT: I think it depends on your geographic location. Because we are in such early days of patient advocacy, either generalists or specialists can succeed. On the coasts, advocates are better known, and it helps to specialize. In the middle part of the country, people are still generalists. Specialization can help you to grow your practice but you also have delivery business challenges. If you specialize, you need to use technology. For example, there aren't yet many people specializing in mediation. People who mediate need to use Skype or some other video conferencing software to mediate between people in different geographic locations. Clients don't think about generalists vs. specialists. They only think about whether you can help them with whatever they need.
Thank you for much for sharing these helpful insights.
For more information, here is a NY Times article: Patient Advocates Help Navigate Health Care.
If you know someone who might be interested in a health advocacy career or who might benefit from hiring a patient/health advocate, please share this article with them.
I first published this article on 2017-10-29 at VocationVillage.com. I updated this version.
