Patient Care as a Collaborative Process: Employing Nontraditional Experts Offers Sympathetic Perspectives on Patient Support

on Thursday, February 16, 2012. Posted in Blog

All the world's a stage,

And all the men and women merely players

-William Shakespeare

 

 

Originally published in Global Forum, February, 2012 (Vol. 4, Issue 1).  Reprinted with permission from Drug Information Association.  For more information, please go to www.diahome.org

 

Wayne Brown

            Choosing to work in the medical industry today, now more than ever, requires knowledge of multiple disciplines. You probably went into your chosen profession because you had an aptitude for science and a desire to help others; but today, with ever-increasing government regulations, and the omnipresent fear of litigation, the industry of medicine has been forever altered.  The good news is that there is assistance out there, if you are willing to accept the help. 

While a patient advocate can be a parent, friend, or loved one, there is a growing population of professional patient advocates, and our role is starting to be recognized throughout the medical society as a viable option for patients in need of support from others who have a true inside understanding of the physical and emotional aspects of a medical condition.

Realistically, there are too many aspects of the medical field to rationally expect anyone to service all facets. If practitioners could focus more on their strengths without feeling compelled to do everything, everyone would benefit.  One of the easiest ways to offer real and compassionate support for your patients, especially those diagnosed with a rare disease, is to introduce them to a professional patient advocate. The best part: You won’t be violating any privilege by simply handing them a phone number or website and letting them make the choice for themselves.

While I am a patient advocate today, this was more of an arrival point than a destination; but as life kept forcing me down the medical path, I grew well-acquainted with the view from the extra chair in the exam room.  As a teen, I watched my mom struggle for years, waiting to finally be diagnosed with Sarcoidosis because at the time, she didn’t seem to fit the profile.  In my 20’s, I was the primary caretaker for my father as he battled brain cancer that had mutated into eight distinct cancers. Then in my 30’s, I was diagnosed with Acromegaly. Each experience provided its own type of confusion and frustration, while simultaneously increasing my drive and passion for a quality life both inside and outside the medical campus. 

As an advocate, having founded Acromegaly Community, Inc. (www.AcromegalyCommunity.com), I have a different, but broad view of medicine today.  Our organization started small.  Frankly, it didn’t even start as an organization, but as a collection of patients on Myspace. Dedication and perseverance can make a difference.

In the past seven-plus years, I have had the opportunity to work with a number of different people in the industry of medicine: Medical professionals in private practice and in university-based facilities, pharmaceutical reps and executives, health insurance experts, and lots of wonderful patients and their loved ones just trying to cope with life from across the globe. 

One observation that seems to be hiding in plain sight is that there are three distinct factions of medicine that have developed and, generally speaking, there seems to be a lack of trust, which inhibits more cooperative work and long-term patient support between medical professionals, the pharmaceutical industry, and patients. The biggest divide is between patients and their practitioners.  It is astounding how much time is spent as an advocate trying to get patients to be more trusting of the medical community.

            When I started out in 2004, my sole motivation in creating that Myspace group was to find other Acromegaly patients to talk with.  While medical professionals have textbooks, rare diseases are not always textbook-friendly – new information is being uncovered almost daily and patients often believe that their personal stories seem to be of no great interest to their practitioners.  The truth is that realities are what they are, and medical professionals have to accomplish so much in a day that it is difficult to budget hundreds of patient stories into an already overly filled day.  More than that, what can a practitioner do for a patient who complains about loneliness as a symptom when privacy laws for medical professionals are quite clear?         

            The three medical, pharmaceutical, and patient camps could work far better for everyone’s benefit if the relationship was symbiotic, rather than antagonistic, by using the Patient Advocate as your bridge.  Not every condition has a patient advocacy group, but a little research can help you find options. RareDiseases.org currently lists 165 advocacy groups, and adds new groups all the time. 

 

The advantages of working with patient advocacy groups are multifold:

1.    We are singularly focused.  In medicine and pharmaceuticals, you may deal with dozens or even hundreds of issues per day.  Patient advocates have their niche, and that is their focus.

2.    Patient Advocates are not bound by strict confidentiality laws.  While a good advocacy group is rigidly respectful of privacy, we can more easily facilitate introductions between patients. 

a.     A 30-something patient who wants to get pregnant and has questions about what it’s like can learn a lot from other patients.  If they ask for a connection, we can reach out to female patients and facilitate a partnership without compliance fears. 

b.    We have the time to be sounding boards or unifiers for patients and their loved ones, who may be frustrated or confused. 

c.     It’s not just about comparing notes.  While “me too” may never reach the physicians’ desk reference guide, there is a clearly cathartic benefit built in when people join our website, www.AcromegalyCommunity.com.  Many patients and loved ones have learned a tremendous amount simply because the group can pool their knowledge resources. One example: There are limited medications for Acromegaly patients, and the injectable meds can be painful. One patient was prescribed a topical anesthetic to be administered 30 minutes before injection, and that information was shared with the group, to the benefit of many patients. 

d.    Medical professionals who are willing to support and promote advocacy groups generally find that their patients appreciate it, and it can actually save them time because the patient is far more aware of their disease.

3.    Patients who belong to Advocacy Groups are eager to be heard.  Patients and loved ones dealing with the effects of a rare or extremely rare disease generally have very distinct opinions on healthcare, pharmaceutical options, and the state of medicine today, and they want to be heard.  The problem is that most of these patients and loved ones are frequently left screaming into an abandoned forest or preaching to the converted, neither of which furthers patient care or medical research.  Patients know what they are looking for, and the pharmaceutical professionals who are willing to hear them generally find themselves in a direct pipeline of inside knowledge.

 

            What makes a good patient advocacy group?  There are a lot of different advocates in the marketplace, and just as with any field, there are those who are in it for the right reasons, and those who are in it for other reasons.  This is tricky because every organization has to work within its own parameters. 

 

Let this serve as a suggested guideline:

 

1.    Patient privacy is ferociously protected.  As mentioned earlier, unlike medical professionals, advocates do not need licenses to practice, and we don’t answer to the FDA like pharma.  While this frees us in many ways, these freedoms must be used wisely.  Many patients do not want to think about their disease all the time, so the level of activity ranges greatly in our group, which is encouraged.  Our website members are encouraged to share as much or as little as they wish.  If a patient does not wish to share their photos, email, Instant Messaging, and cell phone number, our organization does not have the right to violate that trust.  Any time there is a mentorship opportunity, we always ask before sharing information – even if the patient always says its okay.  You don’t know what that patient’s life is like today.  Respect privacy at all costs.

2.    Support is available to all, regardless of income.  Of course, all organizations have operating expenses.  But patients also have bills to pay.  And if they can’t work due to their medical circumstances, they are probably having insurance issues too.  Why scare patients in need by charging to walk through the door?  Even if the organization is willing to waive fees due to hardship, those in need will simply feel unwelcome and no one at the organization will ever know a need went unmet.  Offering enhanced products and services like journals and tee shirts to help raise revenue makes sense.  Working with businesses that help charities to generate revenue is also logical.  We work with SocialRaise.org to run our website, and they have been extremely generous with their support of the charity and our need to control costs.  We also work with StayClassy.org to help with direct fundraising like walkathons, donated birthdays, and the like.  Fundraising must be creative because membership to our website is always free.  The logic is simple: If we charge a membership fee that will help with expenses, certain members won’t be able to afford support, and if we charge a small enough admission to be affordable to everyone, why bother?  If it keeps one person out, then it’s not worth it.  Tangible support should not be a premium service.  Now, this is obviously easier when corporations offer charitable support, which gets back to the team mentality of patient care.

3.    All experts are welcome, even (or especially) when they compete in the same industry.  Of course, not every business, hospital, or doctors’ office is going to choose to work with advocates, but they need to feel welcome when they are ready.  That said, the professionals cannot have unfettered access to patients and loved ones.  You don’t want your membership feeling as if they are nothing more than lab rats. But when studies are solicited, the pharma and medical camps both feel as if patients are eager to help out; after all, it is to their benefit to help advance science.  And when the medical camp chooses to host an event, they know that the Advocacy Group will cooperate and aid in promoting the event.

 

      The key to building a cohesive patient advocacy TEAM is that all members work as one with one key focus: Patient support.  Help the patient and their loved ones live the best lives they can.  The payoff will be huge for everyone.  The medical community will have patients who are educated consumers and therefore more proactive in their own healthcare. Pharma will more easily build brand loyalty by more easily meeting patient needs and desires. And patients will be less likely to feel totally deserted in the process of managing their own healthcare, which means the whole family network will probably feel less overwhelmed.  Everyone wins.

     As a patient advocate, our organization has always worked to support all other patient advocacy groups, pharma, and medical.  Advocacy is not a competition.  It is very common for us to field questions and concerns from around the world, even from other Acromegaly-focused groups.  Different groups offer different ideas and what may work.  Our organization works with all sorts of different support and advocacy groups, some medical, some not.  We all share ideas and feedback.  All this can do is improve support for the people most in need, so we all can win.

      In June 2012, Acromegaly Community will be hosting our second annual convention in Las Vegas, NV.  The goal of this convention is to bring together patients, medical, and pharma, to provide all attendees with information and support.  We showed in 2011 that informational weekends can be supportive, fun, and educational.  Please consider this your formal invitation to attend in 2012.  If you are so inclined, sponsorship opportunities also still exist.  Our weekends are geared so that patients and loved ones, and medical and pharmaceutical professionals, all walk out more knowledgeable, and more unified as a team.  We would love to have you on our team.

 

 

Wayne Brown is the founder of Acromegaly Community, a group focused on patient advocacy, and was the lead writer for the collaborative book Alone In My Universe: Struggling with an Orphan Disease in an Unsympathetic Universe.  He can be reached at This e-mail address is being protected from spambots. You need JavaScript enabled to view it m

 

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