Yesterday, August 19th, was World Patient Advocacy Day.
I had no idea until a fellow Patient Advocate tagged me in a post.
So I had no social media post myself, no graphic, nothing thought out or planned.
Yesterday was a tremendously busy workday, so I never got around to posting anything, but I thought a lot about what it meant.
My first thought was "We have a day? Who chose this day and why?".
I admit, I have done zero research to find out who or why (comment please if you know). I am just grateful.
We have a day!!!! A day to raise awareness of what exactly we do, who we are, why our jobs are vital to patients and why "Patient Advocacy" is a "real job".
We still struggle with Researchers and Industry understanding exactly what a Patient Advocate is.
What We Do:
- Rally patient communities
- Create natural history databases
- Create and supply disease information for patient communities
- Coordinate research
- Fundraise for research
- Write research papers
- Create and manage medical conferences
- Network with other advocates
- Network with pharma and industry
- Network with researchers
- Write books
- Give speeches
- Create videos
- Create presentations
- Give speeches
- Create graphics, newsletters, blogs, websites, phone apps, and awareness products
- Lobby with legislators
- Write / call 8435646534 Senators / Congressmen / Mayors / Governors to support research, patient services or sign proclamations. That might be a slight exaggeration in numbers.
- Write 8394387 letters a year asking landmarks to light upon our Awareness Day
- Prepare for and Board meetings
- Create fundraisers
- Hold fundraisers
- Tell our personal stories
- Tell other patients' stories
- Call / meet / e-mail / message / post and ask for donations to help the patient population 390457485649765464685 times. that is not an exaggeration.
- Write receipts and process the 43 donations that do come in from all those asks.
- Search for sponsors
- Write grant applications and LOI's
- Meet with donors
- Edit videos
- Stalk celebrities and ask them for help raising awareness
- File IRS and state forms
- File NGO paperwork
- Write letters of recommendation
- Oversee all employees and volunteers
- Make sure payroll is met, even if we don't get paid ourselves
- Create new projects
- Manage projects
- Join 8454 alliances and groups to better work with the overall patient community
- Start new alliances if there's a need
- Legal, accounting, insurance, etc... all the admin work needs to be done or overseen
- Constantly keep up with new research
- Frequently go back to school to learn new skills
- Keep up to date with HIPAA and GDPR guidelines
- Give interviews
- Write press releases
- Admin far, far too many social media accounts
- Monitor groups, forums
- Keep patients safe
- Correct inaccurate medical information
- Accredit hospitals
- Force Standards of Care when needed
- Force Standard Measurements when needed
- Deal with angry researchers when you have to beg/push/force anything for better care for patients
- Attend many conferences
- Collaborate on research
- Recruit patients for research
- Create budgets that we never reach
- Raise awareness every day
- Run podcasts and telethons
- Fight with insurance companies
- Fight with doctors and hospitals for better care
- Educate other stakeholders
- Fight for equality
- Have meetings. All day. Every day. With so many different people for different things.
- Work on committees. Too many committees.
- Travel a lot, sometimes to very sketchy places
- Work a lot, at all hours of the day and night. Especially if you are a global patient advocate.
Do you know why Patient Advocates exist?
Because being a patient or family member of a patient is emotionally, mentally, intellectually and physically exhausting. Navigating the medical world is overwhelming, confusing and often, terrifying. Because patients need accurate, unbiased information. Because doctors and nurses don't have time to answer every question or hold every hand and even if they did, patients can't and shouldn't pay for knowledge or hand-holding. Because fighting with insurance and industry is beyond the emotional energy level, education and physically capabilities of most patients and caretakers - they didn't go to school for this and they are trying to just survive each day. Who can spend 2 hours on the phone trying to find a tiny bit of information or resources for the medication or surgery that will keep them alive? Every single day? Because patients need leaders to rally and organize them for research. Because patients want to take charge of their own medical data. Because everyone needs someone to help them during the hard times in life; someone who knows how to navigate the system, knows the medical information, knows where to find help and who cares about them as people and does not profit off of helping them. Someone they know they can truly trust because that person has been in their shoes too.
And because patients need a voice! They haven't had one for most of the history of medicine. Medicine often forgets to see them as real people with real lives outside of hospitals and offices.
Sick person > see doctor > doctor fixes / trying to fix the problem however they see fit / have the capabilities to fix > doctor bills patient.
End of story.
It's neanderthal still the way that patients are treated on conveyor belts.
Patients deserve a say so in their care and to be a part of the plan in the fight against their disease - not just individually, but collectively.
We also:
- Are caretakers of our own patients / are sometimes patients ourselves
- Play referee sometimes between doctors. Sometimes between charities. Sometimes between patients.
- Stand up against anyone/anything that can hurt our patient population
- Get told "no" 9348574875646576 times (no exaggeration)
- Get treated like we don't belong sometimes
- Get looked down on and spoken down to very often
- Get told to sit down and shut up many times
- Fund much of this ourselves
- Deal with way too much drama
- Have to fight off nasty "competitors."
- Always have to constantly prove ourselves to research and industry
- Do what's right, not what's profitable
However, the most important things that we do:
- Meeting with patients
- Holding hands
- Giving hugs
- Finding resources
- Giving them a network of other patients
- Giving help
- Taking midnight phone calls
- Easy worries
- Making hospital visits
- Attending funerals
- Attending milestones like birthdays, weddings, graduations of survivors
- Checking on families
- Praying
- Loving the patients
- Loving the families
- Keeping up with patients by phone, email, visits, social media
- Cheerlead
- Support
- Fight for them
- Protect them
- Give them what they need to grow and have normal lives
- Mother (or father) if need be
- Educate
- Spread hope
We are not just the PTA moms; we are not doing small things. We are the leaders who represent the most important people in the medical industry - patients. We are their shields, protectors, voices. We don't supply a drug, a cure, a surgery, or sell any products. We do not profit off of anyone, and often we give too much ourselves. We are the gatekeepers, the organizers, the oil in the gears that can, and usually do, make the medical world run much more smoothly.
We keep everyone focused where they should be... on the patients.
I know some absolutely incredible patient advocates. So many other charity leaders, all the team and volunteers at CDH International, and all of our parents who advocate for their own children.
I'm a day late, always a dollar short but Happy Patient Advocacy Day to the angels who fight every day.
Next year, I will be on top of it! And hopefully, next year, research and industry will honor Patient Advocates too!
