This week, PatientsLikeMe announced two new appointments to the team: Kim Goodwin and Sally Okun RN. Here Sally, who was promoted to Vice President of Advocacy, Policy and Patient Safety, explains how she’ll continue to make sure the patient voice is heard, collected and disseminated to affect better treatment, services and care. Look for more of Sally in April, when she’ll be the first nurse to grace the stage at 2013 TEDMED in Washington, D.C.
What exactly is patient advocacy?
I like to think of it as actions by individuals, groups or organizations to support the interests and needs of patients across the healthcare system. Patient advocates can be family members or friends, professionals like nurses or social workers or non-professionals, including health coaches and navigators. They can also be nonprofit groups and grassroots activists. For me, patient advocacy is part of my being. It has grown out of my experiences as a nurse and as a family caregiver.
Creating the advocacy role at PatientsLikeMe is a formal step that highlights something we’ve done for years: amplify the voice of our patient members, especially among external groups such as health systems, government agencies and policymakers. We want to continue to drive industry and government to make more patient-centric decisions. It’s never been more important.
What is your safety focus and how will it impact members?
Our safety focus to date has largely been on side effects experienced by patients when using drugs and medical products. These data are an important contribution to the understanding of how medications work in the real world, outside of the controlled environment of clinical trials.
We’re exploring how best to collect meaningful safety information that matters most to you and other patients, including information about medical devices and equipment, infections, falls in care facilities, and complications that may result from overtreatment. Sharing this information with our members and industry at large can support better decision-making and better outcomes.
Why is your role important to patients?
I have the unique opportunity to bring attention to a variety of topics and issues that our members are concerned about. For example, there have been many changes to the healthcare system as a result of the Affordable Care Act. Prominent among these is the concept called “patient-centered care,” which is being infused into all aspects of care, research and policy development.
My new role gives me access to meetings, discussions and conferences being held around the country and all over the world, focused on the nuts and bolts of putting patient-centered care into action. It is vital to have groups such as PatientsLikeMe present at these meetings. Our real-world perspective is essential if we are to move beyond buzzwords to programs and policies that really matter to you, our patients.
What don’t policymakers know about patients?
Probably the most frequently asked questions by policymakers, clinicians and researchers alike are related to patient engagement and patient activation, considered by many to be “the blockbuster drug of the century.” (see this Health Affairs piece) There’s evidence from research studies and demonstration projects that patients who are more engaged in their care and more activated to participate in their care have better outcomes – this can translate into better health for the patient at less cost.
This isn’t news to PatientsLikeMe or you, our members! In fact, our members, who tend to be more engaged and active in their own care, have reported benefits that include improved communication with their doctors, less hospitalizations, improved adherence to medications and better understanding of their condition. Now, that’s real evidence of the power of patients engaging with each other.
How can members be involved in what you do?
Over the past couple of months, I have had the opportunity to reach out to members through our Community Team on a couple of advocacy and policy projects. For example, we recently collaborated with one of our members with MS (LadyMac) for this conference. In the future, I hope to have a place on the website that allows for direct dialogue about current and future activities related to advocacy, policy and safety. It will also be a place where I will circle back with information after attending events, conferences and meetings.
Hi Sally, It’s so nice to meet you! Around PLM I’m better known as Silverfoxx. I am also excited after reading your blogspot above. No one understands the importance of advocacy moren than I!
A little about me: I have been living with PD now for 36 years (young onset). But, I wasn’t “officially dx’d” until Nov., 2001. That’s an awful long time to be dealing with a monster that steals your body from you! At the time of my dx the progression, which had been slow for many years. moved into a rapid progression state. For the next two years I had been on just about every mind stealing drug available at the time! My MDS was runninng out of options so she referred me to her mentor at Temple University Hospital in Philadelphia, Pa. My MDS was recommending radical surgey to remove brain tissue to help control my symptoms. When I got to the hospital I met with the head of the neurology progranm at Temple. Instead of the archaic procedures my MDS recommended, he, instead, recommended DBS/STN Surgey. He then arranged for me to meet with the neurosurgeon that same day since it was a 100 mile round trip drive for me and my wife. The rest is history. On March 31, 2003 I had my first DBS/STN surgery for my left side symptoms. The DBS for my right side was scheduled for 6 months later. This particular surgeon preferred patient safety above enerything else!. Ten days after all of the hardware was implanted in my chest and brain, I returned for ny first post-op visit. Boy, was I in for a surprise that day! After examining all of the op sites, he pronounced me in excellent condition. So much so that he turned on my implanted Soletrs for the very first time. The results were astounding! After feeling the electricity course its way through every nerve on my left side, I couldn’t believe that the left side of my body was returning to me! I actually took off running down the long corridors of the hospital!
when I finally returned to the examing room, the surgeon ordered me to sit down, which I did. He walked over to the chair and asked me to stand without using my hands and arms. Which I did, with no effort. At that moment, the surgeon gave me one huge hug!
For the next five years everything was just wonderful! As a matter of fact, it was soon discovered by my Medtronic programmer in June, 2003, that the one Soletra in my chest was actually taking care of BOTH sides of my body! Medtronic and all of my docs are still trying ti figure that one out. In any event, the battery died in my original Soletra and it was replaced in July of 2008.
Fast forward to Apr 2009. While on an extended vacation to Florida, I inadvertantly rolled out of bed and my head was wedged between the bed and nightstand, while my body continued its full roll. That little roll out of bed broke the lead running from the Soletra to my brain. The real shocker was how far my PD symptoms had advanced!
A phone call from Fla to Philly was made. I explained that I was going to continue our vacation until mid Apr 2010 and upon returning home, schedule an appt with the surgeon to have the broken lead replaced. By then, it was also apparent that the symptoms on my right side were becoming “out of control” so, in addition to replaced the confirmed broken lead, he would also do the 2nd DBS/STN for my right side symptoms.
Both procedures went well, and I was discharged from the hospital the very next morning! I haven’t looked back since!
There is another chapter to my story that won’t have a bright outcome however. I’m dying. Plain and simple, but not from PD or because of my PD. In 36 years I have been able to ccompensate in many ways for what has been lost due to my PD, but most of all, I never let it define me!
Cur ro rhe chase: In Feb., 2010,
I was preparing to get a shower. The water wasn’t even on . The last thing I remember was not being able to breath and I collapsed intto the bathtub. My waist and feet were out of the tub while the upper part of my body was jammed between the wall and the tub, My wife heard the bang and came running. Her first reaction was to try and help me out of the awkward position my body was in. The first thing I noticed upon regaining consciousness was that I had no feeling at all in my body from the neck down! I was able to tell her NOT to try and move me at all but to call 911! The odd thing through all of this was that at the time I felt no pain at all! Upon getting me out of that extremely awkward and embarrassing position (I was ass nekid as a J bird) they laid me in my bed and the EMS personnel checked me over, pronounced me fit, and left. About an hour later the pain in my right chest began. As the evening wore on, a call to 911 was made again! Again, refusal to transport to the hospital! My ire was reaching the boiling point! I was up all that night with minute by ninute worsening pain in my right chest, In the very same area I remember falling into the tub edge earlier. I just knew, or felt, that I must have broken a rib or two. By 6am I could no longer stand the Godawful pain. I woke my wife and told her she had to get me to the ER quick. Upon arrival a hosp worker must have noticed the stress on our faces, because befoore the sar was completely stopped, he was at my door with a wheelchair. Right past triage he pushed me, right into an examing room. Less than a minute later I was examined by a dooctor while my wife was explaining to him the events of the prexeeding evening, including the two refusals to transport me to the ER! He then said, based on our story and my many years with PD that I could have broken a rib or two, So, off to Xray I was taken.
Fifteen minutes later I was back in the exam room. A short while afterwards the doc appeared with a grim look on his face.
My immediate reaction was to ask how many ribs I had broken. His reply: “none”! The pain was being caused by one of the worst cases of pneumonia he had ever seen! Needless to say, I was immediately admitted to the hospital for treatment. Seven days later I was transferred to a rehab facility. I was there three weeks. One day after being discharged from there, I was readmitted to the hospital. This time with pneumonia in BOTH lungs, along with CT Scans that were showing an illness far worse ….. End Stage Emphysema!
A week after the pneumonia was cleared up, back to the hospital again. This time for a bronchoscopy so the pulmonologist could see what was actually going on inside my lungs, plus, there were suspicious pulmonary nodes he wanted totake biopsies of, So, in he went, /he drained both lungs to ward off pneumonia again, and took quite a few biopsy samples. That evening he came into my room to tell me what he found. My wife had just left to go to the hospital cafeteria to get a bite to eat. So the pulmo proceeded to tell me what he found. “No alveoli in the right lung, It’sjust a blackened sack hanging there, my left lung is about 60 to 80% destroued. The biopsy samples would take about a week, and that at best I had 2 to 2-1/2 years of life remaining. He based that prognosis on the damage to my lungs by the Emphysema!
He then left the room as quickly and futively as he arrived! I was in shock at what he just toldme and he just leaves!
My wife and sisterinlaw returned a short timelater. It was evident tto them that something was wrong, just by the look on my face! Itried, but couldn;ttell her what the doc hsd just toldme. I did tell her that he may still be at the nurses station since he had just left the room moments before he returned, She went to find him. After about a half hour later she returned, as ashened faced as I was feeling,
Another fast forward: After arriving home, I had my wife check the body parts that I couldn’t easily see. No where on my body did we find an expiration date! After a few more weeks of home healthcare and PT I would notice my heartrate was spiking extraordinarily high, At first I thought it to be a malfunctioning pulseox meter. At the time, I was on O2 24/7 and I was taking Albuterol by nebulizer every three hours. Unknown to anyone at the time, I was evtremely allergic to Albuterol!
What would happen is that at least one hour after each nebulizer treatments, I would have extreme tachycardia. By extreme I mean: one day my home heslthcare nurse just happened to show up about an hour after one of my nebulizer treatments. My pulse rate was at 286 BPM and still rising. By the time the ambulance arrived, it was in the 300’s range! Once again, I was admitted to the hodpital. This time though I became my own advocate. I had to because the stupi pulmo ordered
albuterol ttrestmentd every three hours! I did hslf of the first trestment then stopped. Boy, did I have a fight on my haands with the nurses and respiratory techs! I grabbed a pulse ox meter, put it on my finger and showed them what Albuterol did to me! They thought the pulseox was defective so they got another one. Same results, only by then my pulse rate was approaching the 700+BPM range. Needless to say, I immediately fired the my two pulmonologists before they killedme, and checked myself out of that hospital the next day!
to be continued later …..
Hi – Welcome to Kim Goodwin and Sally Okun- I look forward to seeing the improvements and being a part of PLM community. This community has helped me in so many ways I can not begin to name them all. Starting with being able to communicate and share with other AKU patients about what is happening to me and we share what helps us and also give encouragement. I am so grateful for this forum.
@ Jim Evridge – please continue I am sitting here on pins and needles – grateful you found a voice and took charge of your medical care and wishing you wellness – Kind regards,
Donna Marie aka “Noodlez” on PLM website.
Just wanted all to know my dear friend Jim Evridge aka; Silverfoxx passed In July 2016.
My condolences to his wife Kathy and family.
Jim helped many of us with information, sharing stories, poems he wrote and making many feel good.
Margaret (Margie) Swope
I have been away from patientslikeme for a couple of years now. But I remembered most of the oldies there. I had built a repoire with them and loved them dearly. After I decided to check in with PLM, I first asked about Silver Foxx, and learned of his death. I know it is late in coming, but I would like to give my Condolences . He was an extremley brave man. whom knew his days were short, but desire to help those he could with his knowledge everyday available. I loved his teasing and his sense of humor. I am saddened but not surprised of his passing. I am so happy he is at peace and look forward to seeing him in Heaven, I will know him by his Silver Hair. God Bless his family and all who loved him and that will miss his wisdom.
With Grateful Hearth to have known him, but never met him.
Cindy Brown known as Lucyl on PLM.