A closer look at patient advocates

Terrain thickens. Diverging pathways assume similar characteristics. Anxiety peeks out from beneath boughs and crooks. Suddenly, you’re right back where you started and it’s getting too late to press onward. We’ve all been there — painfully lost on the journey to a better way of life. 

Whether stumped on an Appalachian trail or the trail to angioplasty, it’s always better to have a guide at the ready rather than roughing it alone. In the case of the latter, patient advocates have emerged from the hollows of healthcare to help the modern patient — bombarded by the accumulating brush of industry regulations and insurance stipulations — find their feet in moments of need. Whereas, at one point in time, physicians and other professionals in the field doubled as caregivers and patient advocates, current influxes in patient volume and administrative tasks have left such individuals limited in their advocacy roles. Thus, a more singular enterprise has since emerged, with those skilled in the medical field shifting their prime agency toward sponsorship almost explicitly.

To get a firmer grasp on the patient advocate as stand-alone figure, PhysBizTech caught up with Karen Winston, vice president of regional business accelerator CONNECT, certified clinical nutritionist and author of HIYA: Patient Advocacy was Her Calling and Salvation, and got the skinny on a $375 billion (annual) medical market.

PBT: Can you describe briefly what a patient advocate is? Where do they fit in the healthcare schema?

Winston: Today's patient advocates are commonly employed by a medical institution and can be contacted by patients/families for help in understanding and navigating the complex insurance, regulatory and medical treatment systems. They typically have a medical or nursing degree or are a medical administrator trained by the medical institution. There are also private patient advocates who do much the same work, but charge an hourly rate. The benefit here would be that the private advocate would have less bias toward a particular medical institution and have the patient's interests as their top priority. 

Note that patient advocacy and caregiving represent a growing cottage industry that is unregulated, but valued at about $375 billion annually. I expect this care segment to continue to grow in parallel with the growth in the aging population. There are also private certification operations cropping up which may become standardized and eventually succumb to regulatory oversight at some point in the future.

PBT: How has the role of the patient advocate developed over the years alongside advances in technology/social media, the shifting insurance/regulation climate, etc.?

Winston:  As our medical and insurance systems have become more complex for the general public to fully understand, the role of the patient advocate has become a necessity. As I note in the epilogue of HIYA, healthcare is the only aspect of our life that requires the vigilance of a 24/7 advocate to ensure the patient receives accurate, fair and timely access to medical attention/treatment and is able to obtain the insurance coverage they are rightfully due.    

Regarding the influence of technology on patient advocacy, the relationship has a tremendous future. Right now mainstream public is aware and comfortable with the emergency "necklace" that can be pushed if the individual falls or needs emergency care and the growing but still disjointed EHR and PHR systems. Beyond these technologies is a new frontier in home health monitoring and sensing devices, 24/7 vital sign monitoring, connected (telemedicine) health, EHR systems, quantified self-diagnostics and computer applications, etc. All these new tools and electronic services coming on the healthcare scene will hopefully strengthen the ability for the patient advocate and health providers to more fully serve the patient -- hopefully we'll experience the paradigm shift from a financial-centric model to a patient-centric one. 

PBT: What kind of relationship do patient advocates often have with physicians and other healthcare professionals? With patients?

Winston: Depending on the employment status of the advocate, the relationships vary. From what I can tell, most doctors appreciate and rely on patient advocates to fill the administrative informational role that precedes medical intervention, thus allowing the doctor and other health providers who already have little time to spend with a patient, to focus just on the medical issues at hand. If the advocate is an employee of the insurance company, I imagine the relationship with the physician could be a difficult one if treatments are restricted in any way. 

From the patient's perspective, the patient advocate can be the critical bridge needed for obtaining timely access to and appropriate coverage for medical services. In a difficult and complex case, the patient may indeed look at their patient advocate like they might an attorney — someone arguing for rightness and fairness on their behalf.

PBT: Is there anything else pertinent to patient advocacy that you would like to comment on?

Winston: In the epilogue of HIYA, I introduce a new type of patient advocate which I call "Quality of Life Advocate," because I believe for many people traditional patient advocacy, just like traditional medicine, stops short of treating the whole person.  Think of the Quality of Life Advocate (QLA) as the general contractor (GC) for building your house.  Ideally, the GC takes into account all systems and aspects that go into each and every detail of your house and coordinates all subcontractors to fulfill the building contract correctly, within the timeframe and on budget. Now, apply this concept to your health during a chronic or acute medical episode: The QLA would research treatment options for your "condition" and discuss them with you before and after doctor visits; would coordinate all specialists and tests ensuring that communication between attending doctors was happening to avoid conflicting treatments and medications; attend and take notes at medical visits; track down insurance information and coverage approvals as appropriate; would see to it that business back home (feed the pets, water yard, trash, mail, etc) was being handled by someone; would advise on complementary healing treatments and specialists that could support the medical treatments and coordinate as appropriate; would advise or provide healing foods and creature comforts (favorite bed clothes and snacks) if approved by the doctor, and finally, if patient has no immediate family or friends nearby, would stay close to the patient during any hospital stay to ensure medical staff was meeting needs and requirements for the patient.

Another way to look at the role of the QLA is as the combination of traditional patient advocate, family caregiver, and the personal care that trained hospice volunteers provide.