Regina Holliday – on Patient Advocacy

Recently, planners of an upcoming event asked me some questions and here are the answers. 

1.    How would you define the role/responsibilities of a “patient” advocate?

The patient advocate can be defined in several ways.  Sometimes this is an official staff member in a facility.  They can operate as a patient navigator or customer service operative.  In the best scenario, their job is to help the patient understand the processes and options in care within the facility.  In the worst scenarios, the patient advocate operates as a tool of damage control to damper litigious action of distraught family members.

Sometimes the patient and family hire a patient advocate from a registry like the AdvoConnection.  In this case the advocate may be a nurse, a doctor, or a trained and experienced caregiver who helps the patient while hospitalized or at home. They obtain medical records, ask questions, keep notes, help patients make their own difficult medical decisions, and review and negotiate medical bills.

Often the patient advocate is a close friend or family member who is not paid for their service. This advocate provides many of the same services as a paid advocate, but often is learning on the job.  Occasionally they have a background in medicine, and use that knowledge to great success helping the patient ask the right questions and get appropriate care at the correct time.

Finally, there are patient advocates focused on policy.  I am often classified among this category, although I prefer the term patient activist.  A patient advocate focused on policy attends local, regional, state, and federal meetings to provide a patient perspective in policy decisions. 

*(This is by no means meant to be an exhaustive definition of a patient advocate. Just how I define it in response to this question.  There are several other resources out there to learn more http://pacboard.org/2016/03/09/patient-advocacy-vs-medical-advocacy-view-from-the-pacb/ is one.) 

** (Additional edits were made on 10-5-16 to clarify the responsibilities of patient advocates in relation to the AdvoConnection.) 

2.    You do a number of these sorts of speaking engagements and presentations around the country. Are there some unifying themes--clear trends --- you see, common ideas that many people share about their worries or attitudes toward health care? Patient safety? Patient advocacy?

I have been attending medical conferences and public meetings for the past seven years. In that time I have watched HITECH legislation morph and change.  Patient access to data at stage one of Meaningful Use had budding teeth and at stage two it got poor fitting dentures.  I have watched the ACA become the law of the land, only to see constant steps to repeal it. 

I watched the concept of patient engagement grow from a demand in small healthcare meetings, to a hashtag on twitter  (#patientsincluded), to trend of conferences inviting patient speakers.  I hoped that the next step was true partnership in decision-making and design.  Sadly, of late I have often heard that “patient engagement” was out of fashion.  We are now onto MIPS and MACRA and massive ACO’s. 

I have watched patient safety advocates work for years with very little attention paid to their cause. I was happy to see Value Based Care begin to role out, as it addressed so many concerns of these advocates.  I am saddened to hear how many attendees at conferences expound on their love for fee for service.   Or twist the intended purpose of reducing readmissions, by leaving patients in hallway for days to be “observed,” but not admitted after complications.

The most apparent trend of the past seven years is that there are powerful lobbyists in this industry that will do anything to keep the status quo alive and well in healthcare.  There are also amazing individuals, often on Twitter, (check out #hcldr), that will not stop fighting for the patient voice and the positive disruption that comes when data silos are leveled and technology is used appropriately. 

3.    Will patients ever be like consumers of other products? Outside of elective procedures or choosing a birthing place/option, how much real consumer choices do patients have in their health care? How would you like to see those avenues expanded or re-routed?

I hate the word “consumer” when applied to healthcare; it assumes we take and never give.  Partnership in care requires two-way communication.   Care is always about choice.  When we embrace price transparency, a patient can decide which facility has the most affordable MRI procedure.  When we have medical record data transparency coupled with a clinical trials database, a cancer patient can decide the best personal path for their care.  Which may include a hospice path, if that is their choice. 

We have a choice right now.  The difference in healthcare is that we have to fight for that choice, whereas in retail it is expected that customer will decide which items to buy rather than the shopkeep.     

4.    How would you like to see health care systems and hospitals--particularly public and teaching systems-- involve patients or their advocates in meaningful aspects of care best practices, policy making and priority-setting?

Patients, caregivers, and patient advocates need to be present in meetings throughout the facility.  For far too long we have been forced into the role of lobby designers.  We ask that you invite us to take part and provide appropriate recompense for our time.  Or schedule the meeting after the workday is done at the facility.  That would be fine.  Then everyone at the table can be the unpaid volunteer that patients and family caregivers are so often asked to be.  

You might want to make sure we can have those meetings next to a playroom though, so our children can play together while we work together to create new policy. Because whether you are a patient or a provider, childcare is expensive.  

5.    How would you describe your painting style and approach?

My art looks like the work of the children’s book illustrator Garth Williams and the activist painter Diego Rivera fused.  As a few people have told me over the years,  “Your work is often sweet and disturbing at the same time.”

  

6.    Describe the healing benefits and/or the impact that making art that tells stories about health care can have on patients, survivors, care providers?

As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul.  It is a very nice feeling to be in the zone and at one with the cosmos.  But the creation of art could feel like a nail ramming through my hand, and I would still create.  I use art as a tool and the goal is to impact others.

It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article.  It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts.  To know this image is someone’s story. To look at the painted eyes that look into yours and seem say, “I died, and it is all for naught if you do not act.” 

7.    Of all the art you’ve made--your Walking Gallery, the murals -- can you choose one piece and describe it and explain why it’s a piece that you especially want to share?

My favorite piece is “Are you alright?”  In that painting, I captured my late husband Fred.  He stares at me from that painting like he is still with me.  Still alive on pigment covered canvas.  Still urging me to help him, a patient. 

And every day I do exactly that.