20 IG Living | August-September 2016 | IGLiving.com

By Dana Henry

Paving the Way for Healing: The Role of the Patient Advocate

FINDING THE RESOURCES and care one needs to deal witha challenging medical condition can be difficult. It may requiregetting a second opinion, coordinating with several specialists,having numerous tests or procedures, coordinating follow-upappointments, weighing different treatment options, spendingtime in the hospital and juggling complex treatment plans. Justreading that list can be a little overwhelming. It’s easy to see howactually working through all those steps can become a full-time joband can keep patients from focusing on their health and well-being.And, that’s where patient advocates come in. Their role is to assistpatients so they can focus on what matters: their health.

What Do Patient Advocates Do?A patient advocate is someone who can help patients navigate

their healthcare journey in myriad ways. Professional patientadvocates work with hospitals, insurance companies and drugmanufacturers, as well as independently as private patientadvocates. Lay advocates don’t have formal training but cannonetheless be invaluable. They are often the friends and familymembers of those living with serious health issues. This articlemainly deals with professional patient advocates. (Find tips forworking with lay advocates in the sidebar titled “Four Ways toRecruit and Support Lay Advocates.”

You’ve probably heard the saying: “Be your own advocate.” But, sometimes, that’s easier said thandone. Trying to wrangle all aspects of a complicated health issue can leave patients feeling frustrated,discouraged and drained. If that’s the case, a patient advocate might be just the ticket.

21IG Living | August-September 2016 | IGLiving.com

The Agency for Healthcare Research and Quality defines ahealth advocate as someone who can ask questions, recordinformation and speak up for patients so they can betterunderstand their condition and get the care they need.1

However, an advocate’s role can be much wider ranging (Table 1).The National Patient Safety Foundation defines a patientadvocate as a “supporter, believer, sponsor, promoter, cam-paigner, backer or spokesperson.”2 An advocate can also focuson a narrower range of services, such as those who specializein medical billing.In the Journal of Medical Ethics, Lisa Schwartz writes that an

advocate can help patients translate their desires into a cogenttreatment plan and can help steer medical teams in the directionspatients prefer. But, there are many other reasons for patientadvocacy, Schwartz says, adding that there are also caveats,including ensuring the advocate can clearly understand patients’needs and can represent those needs without distortion.3 Thedemand for patient advocates is evident. In 2007, CNN listedpatient advocacy as one of seven positions poised for growth.4 In2010, the Institute for Change Partners in Care Foundationidentified patient navigation/advocacy as one of six emerginghealthcare occupations that have the potential to keep peoplehealthier and lower healthcare costs.5

Finding a Professional Patient AdvocateThere are many reasons patients may want to work with a

professional advocate. “Volunteers can be wonderful, and theprice may be right, but they often don’t have the experienceyou need to be sure you’re getting the best care you can get,”says Trisha Torrey, who works as a writer, speaker and privatepatient advocate.6 Here are three ways to find different types ofadvocates.

Insurance. Patients who are insured can check their healthinsurance benefits. Large employers often provide advocateservices such as Health Advocate, the nation’s biggest employee-based advocacy firm.7 Some Blue Cross and Blue Shield plans,for example, offer free advocate programs to help patients andtheir families with complex healthcare issues. Services offeredthrough these programs include obtaining pre-authorizationsand prior approvals, speaking to medical staff with a patient oron a patient’s behalf, suggesting community resources andresolving billing issues.8,9

Online directories. Several websites offer directories ofprivate patient advocates. These include AdvoConnection(advoconnection.com) and the National Association of HealthAdvocacy Consultants (nahac.memberlodge.com/directory).

Torrey also recommends patients search for phrases such as“health advocate” and “patient advocate,” along with the nameof the area where they live to find advocates in their vicinity.Many advocates will have websites or LinkedIn profiles sopatients can get a sense of the services they offer and the fees theycharge.6

Drug manufacturers. Some manufacturers offer paid andvolunteer advocates to support patients in learning about theirconditions and using their company’s medications for treatment.For instance, CSL Behring and Baxalta, manufacturers of

• Arrange transportation

• Ask questions about next steps with regard to diagnosis and treatment

• Compile or update vitamin, supplement and medicine lists

• Discuss recommended health services

• Explain benefits

• Explain medical jargon

• File paperwork and assist with insurance matters

• Find support groups and other community services

• Get pre-authorizations and prior approvals

• Give the patient and family members emotional support

• Help with delays in getting tests, treatment or information

• Help the patient follow treatment instructions

• Help the patient get copies of relevant medical records

• Locate doctors and specialists

• Make sure the patient and family members know the factsabout the patient’s condition and care

• Manage physician referrals

• Navigate healthcare networks

• Recommend health and wellness programs

• Research treatment options, procedures, doctors and hospitals

• Resolve hospital and doctor/provider billing issues

• Respond to requests and concerns 24/7 or during set hours

• Schedule appointments

Table 1. Types of Assistance a Patient Advocate May Offer6,8,9,12,13

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)

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s serum IgG trough obtain the patient’

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. doseeek after the last

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). el.

-------------------

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swelli.,reactions (i.ehe most common adverse reactions observed in T

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gov/medwatch.Pharmacovigilance at 1-866-915-6958 or FD

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achieve the desired serum eeded.

25IG Living | August-September 2016 | IGLiving.com

subcutaneous immune globulin, have programs in whichfellow patients share their own experiences with their treatment,answer nonmedical questions, connect patients with resourcesand offer encouragement. This type of peer advocacy is morelimited than the health advocate services insurance companiesoffer, but it is still valuable and can be used in conjunctionwith other advocacy services. Some drug manufacturers suchas Baxalta also offer nurse advocacy programs for insurancequestions, treatment-related questions and educationalresources.10,11

How to Choose a Professional Advocate Torrey lays out the basic framework for evaluating a patient

advocate and advises starting with an interview. “It will beimportant to you to develop a rapport with your chosen advocateto have confidence in her abilities, to trust her to collaboratewith others involved in your care and help you understand youroptions,” she says. “As you ask these questions, you’ll be able totell whether she fits your needs.”6

Patients should also find out if the advocate candidates haveworked with similar cases. They should ask about their credentials,and find out what services they offer to determine if thoseservices are what they’re looking for. They should discuss thetime frame and workload, and make sure those are a good matchas well. What patients don’t want is to be surprised by any unan-ticipated charges, so the advocate’s compensation should bediscussed, as well as whether pricing is a flat rate or variabledepending on the type of work being done. Lastly, referencesshould be checked. “This is perhaps the most important of allthe interview questions,” Torrey says. “References are vital.”6

Torrey notes, however, that advocates may be reluctant to giveout contact information for their clients because of privacyconcerns. “If so, ask [the advocate] to provide your name andcontact information to other patients who would be willing tospeak to her abilities,” Torrey suggests.6

Researching patient advocates might sound almost as daunting asmanaging healthcare issues. After all, patients want to work with anadvocate so they can do less footwork, not more. Therefore, patientsshould think of the research and selection process as putting in timeup front that will be paid back to them with interest as they movethrough their medical journey. The payoff will be well worth theeffort when their advocate helps them shoulder the burden theywould otherwise be carrying alone.

DANA HENRY is a writer and editor in the Kansas City area who specializes inscience, medicine and health.

References1. Agency for Healthcare Research and Quality. Why It’s Wise to Use a Health Advocate. Accessed atwww.ahrq.gov/patients-consumers/patient-involvement/health-advocate.html.

2. National Patient Safety Foundation. Role of the Patient Advocate. Accessed at www.npsf.org/?page=patientadvocate.3. Schwartz, L. Is There an Advocate in the House? The Role of Health Care Professionals in Patient Advocacy. Journal

of Medical Ethics, 28, 37-40. Accessed at jme.bmj.com/content/28/1/37.full.4. Zupek, R. Seven Emerging Jobs Poised for Growth. CNN, Aug. 5, 2009. Accessed at www.cnn.com/2009/LIVING/worklife/08/04/cb.7.emerging.jobs.

5. Atkins, S, Coté, S, and Patricia H. How Boomers Can Help Improve Health Care. Institute for Change, Partners inCare Foundation. Accessed at www.metlife.com/assets/cao/foundation/JobsHealthPaper3-5-10.pdf.

6. Torrey, T. How to Find, Interview and Choose a Patient Advocate. VeryWell, Jan. 2, 2016. Accessed atwww.verywell.com/how-to-find-and-choose-a-patient-or-health-advocate-2614923.

7. How to Find a Good Patient Advocate. Consumer Reports, May 5, 2008. Accessed at www.consumerreports.org/cro/news/2008/05/how-to-find-a-good-patient-advocate/index.htm.

8. BlueCross BlueShield North Dakota. Wellness and Care Programs. Accessed at www.bcbsnd.com/health-and-wellness-programs/member-advocate.

9. BlueCross BlueShield of Alabama. BlueCare — New Health Advocacy Program for Members. Accessed at www.bcbsal.org/providers/publications/providerFacts/2014-033.pdf.

10. CSL Behring. PI Support from a Personal Point of View. Accessed at www.hizentra.com/voice2voice-advocates/pi-support-overview.aspx.

11. Baxalta. My Ig Source Answers and Advocates. Accessed at www.gammagard.com/primary-immunodeficiency/patient/patient-support.

12. Clancy, C. Navigating the Health Care System. Agency for Healthcare Research and Quality, July 6, 2010. Accessed atarchive.ahrq.gov/news/columns/navigating-the-health-care-system/070610.html.

13.WebMD. Hospital Patient Advocates – Topic Overview. Accessed at www.webmd.com/health-insurance/tc/hospital-patient-advocates-topic-overview.

Four Ways to Recruit and Support Lay Advocates

Ask people you trust. A lay advocate may see a patient’s med-ical records and will be privy to personal health information.As such, patients should make sure to choose someone theytrust with this information. They don’t want to overhear theiradvocate talking about their health issues at the water cooleror the next family reunion.

Choose those with the chops for the task at hand. The advocaterole should be filled as if it were a professional position. In theworkplace, employers wouldn’t hire someone to handle theirfiles if they weren’t organized. The same concept applies toadvocacy work. Patients shouldn't ask someone who isn't agood note-taker to take notes at their appointments. They alsoshouldn’t expect someone who doesn't have a solid under-standing of medical issues to distill their medical information.Finding the right advocate for the right type of support willmake the process easier and more fruitful for everyone involved.

Divvy up the work. Too much weight should not be placed onany person’s shoulders. Studies show that family caregivers cansuffer from the effects of stress related to supporting their lovedones. The same holds true for those playing the role of advocate.If possible, the responsibility should be spread out amongseveral people. Maybe a family member can go to doctor visits,while a friend can help the patient prepare for appointments.Also, areas of specialty that different advocates can focus onshould be considered. This will keep advocates from gettingburned out and will help ensure they aren’t stepping on eachother’s toes — or the patient’s, for that matter!

Remember to say thank you. Advocates are taking time out oftheir day (sometimes day after day) to help patients with theirhealth and recovery. They should be told on a regular basis howmuch their support means. A heartfelt thank you or a personalizedcard can go a long way in showing appreciation.

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