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Point of View: Patient Advocates vs Patient Experts

A lot of different terms are thrown around for patients and caregivers as they take control of their healthcare journeys and become more empowered throughout their online health communities. While WEGO Health works with a network of “Patient Leaders,” this blanket phrase encompasses various levels of engagement and exposure, most notably Patient Advocates and Patient Experts. While one can certainly be the other, there are several key defining factors that separate the two.

So what is a “Patient Advocate?”

The Oxford English Dictionary defines the term as, “a person who represents and campaigns for the interests of patients within a healthcare system.” While broad, this is definitely the easiest way to put it, although this definition has changed and continues to evolve over time.

Patient Advocates are not a new breed; you can see hard evidence of them making profound changes in the public health landscape since Dr. Sidney Farber created the notion of “total care” in the earlier half of the twentieth century. This “total care” put forth the legitimacy of treating the entire patient and not just the affected portion or symptoms—mental health, social work, nutrition, and the remaining facets of the patient experience can be just as important as the treatment itself.

Now, you very well could be saying to yourself, “no s—, Sherlock,” but the idea that patients were not defined by one condition took some getting used to and can still be overlooked by some institutions, insurance companies, and governing entities across the healthcare industry.

Enter the “Patient Advocate”… A Patient Advocate can be anyone—patient, caregiver, loved one, friend, coworker, person who saw a video online that one time—who takes a vested interest in the needs of those impacted by a condition and works on their behalf. You can see them sporting pink every October or campaigning on Capitol Hill for a chronic disease.

Many Patient Advocates will start on this lighter/pink-washed side of the Patient Leader spectrum by participating in events and maybe joining some online support groups, as healthcare communities have followed other special interest groups in taking their advocacy work online.

Patient Advocates typically join groups and become involved in activities for support, either to contribute emotional support to the patient community or to receive the advice and caring of others who are or have been there. These connections can be keys to prompt an expansion into social media space conversations with other patients or may be starting a blog, growing a patient advocate’s network.

At WEGO Health, we work with many of these Patient Advocates in our quantitative research and consumer insights projects, through our Truvio® mobile surveys and questionnaires.

The Patient Influencer: In-between Patient Advocate and Patient Expert

Since these Patient Advocates are often still learning about their condition in most cases, they depend on what I will call the mid-range between the Patient Advocate and the Patient Expert: the Patient Influencer.

These Patient Influencers have learned the ins-and-outs of the healthcare industry – and they aren’t afraid to let you know it. They usually offer a specific perspective, their own hard-won perspective on the science of the day, medical professionals, and the lessons learned from inside the healthcare system. Often, I see the types of Patient Influencers break down like this:

patient facing and industry facing venn diagram

The sweet spot is in the middle.

 

A Patient Influencer is unusually effective in changing the behavior of others, exerting impact over specific groups of people or organizations. They have real expertise and an authentic relationship with their communities; they are trusted and well known by those communities.

An influencer’s effectiveness is multiplied, and sometimes defined, by social media prowess. But digital reach is only one part of true influence, which is best measured by the response of their communities. In health, that response is largely based in trust.

Patient Influencers are often targeted for market research programs, like Community Insight Groups and Truvio® mobile studies, because they are able to speak on behalf of the greater patient community and to make specific, prescriptive recommendations on how pharmaceutical companies and healthcare organizations are able to work with the patient community they represent. This advice includes assistance with raising product or program awareness, missing resources to fill patients’ needs, or testing out products like apps or marketing materials. Patient Influencers are also able to help disseminate surveys and questionnaires to the Patient Advocates in their networks – crowdsourcing to make the right connections.

 

So what makes a “Patient Expert?”

A Patient Expert, while not officially defined by Oxford, is usually a business professional for whom a serious health condition has profoundly changed the direction of their life and career.

So what becomes of patients with highly marketable skills, but real health limitations? How can Patient Advocates and Influencers combine their passion for helping other patients with skills in the business, technology, consulting, marketing, and other industries?

Enter the “Patient Expert”… one example is Kym Martin, who happens to now be VP Strategy at WEGO Health (I know, shameless plug). Kym has her MBA in Business Management and has been working in Sales and Business Development on the executive level for over 20 years. But Kym has a competitive advantage over other professionals in healthcare, because she has also spent more than 30 years as a patient!

Kym is a 4-time cancer survivor, with her first diagnosis occurring during her teenage years. Because Kym had this vast knowledge (one might even say expert-level) of the healthcare industry, but experience and skillset pertaining to business, she founded a company to help clients create patient-focused and cost effective solutions in healthcare. In 2015, she was named one of the “15 Disruptive Women to Watch,” alongside Hon. Ruth Bader Ginsburg.

This melding of worlds can yield remarkable results for all parties. Patient Experts are patients who understand the wants, needs, and perspectives of their respective communities, and who have learned about healthcare from inside the system. WEGO Health Experts is a network of these Patient Experts who can provide a wide variety of professional services from product design to usability testing to speaking engagements to consulting and beyond.

Patient Experts do all of this while focusing on questions like, “is this what my community needs?” and “is this being designed in the best interest of the community within this condition category?” Patient Experts collaborate with health companies of all types to face the industry’s toughest challenges.

Healthcare companies are able to capitalize on this freelance model – hiring on-demand – while Patient Experts are able to contribute positively to their communities, to shape the programs created for their communities, and to benefit financially.

In tiered form, here are the definitions of Patient Advocate, Patient Influencer and Patient Expert broken down visually:

Patient Experts, Influencers and Advocates pyramid

Patient Experts encompass qualities of both Patient Influencers and Patient Advocates.

 

Patient Experts collaborate with forward-thinking health companies to face industry’s toughest challenges.

Are you collaborating with Patient Advocates, Patient Influencers, or Patient Experts to bring patient-centric solutions to market? Let us know how impactful the collaboration can be, and tell us about your health projects.


Corinna Hablig is the WEGO Health Sponsor Programs Manager. Corinna has worked in the healthcare industry for several years, previously in the clinical trial sector and for a nonprofit advocacy foundation, correcting the grammar of everyone she encountered along the way.  You can follow her on Facebook or watch her post incessantly about her dog on Instagram.

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