 | By Regina Greer-Smith Now more than ever, patients, caregivers, and others across the healthcare community are having a meaningful say in what traditionally has been the domain of scientists. Today, these diverse voices are helping to decide which research questions to study and which outcomes to focus on. |
 I’m the mother of a wonderful girl named Shannon, who has a rare genetic condition called Phelan-McDermid syndrome. For years I steered clear of research information about her condition and focused on the daily challenges of meeting her needs. It never occurred to me that beyond being Shannon’s mom and caregiver I would play another vital role – as part of the research community helping her and others like her live a better life.
PIPC Patient Blog: Andrew Sperling on ICER Process for Tardine Dyskenesia Treatment Review6/12/2017
 NAMI is proud to be part of the movement to assess value of health care treatments and interventions, and to build an infrastructure for patient engagement throughout the healthcare system, particularly in the shift to value-based payment and delivery models. However, we think it’s crucial that any efforts to measure and assess value, incorporate the patient perspective, and consistently and meaningfully engage patients along the way.
 What is the first thing that comes to your mind when you hear the word, “research?” Maybe you think of book reports and term papers, or maybe your mind goes to Hollywood depictions of people in white coats running testing laboratories. Perhaps, you think of something else entirely.
Whatever your association with the word, research means many different things to many different people. It can sometimes be difficult to encourage people to engage as active participants in healthcare research, particularly if their associations with the concepts are less than positive.  College is stressful. Especially being new in college. Your routine is turned upside down, you are focused on finding new friends, involving yourself in different clubs on campus, and passing your classes. There is a new load of stress that comes with your new world. Add managing an invisible chronic illness to that laundry list and it seems next to impossible to fit into the college lifestyle like your peers.
I had 14 years of diabetes management under my belt when I was a freshman political science student at American University. I prepared and thought about my transition to college for weeks. I had registered with my school’s Academic Support and Access Center for accommodations, scoped out the dining hall offerings, and had the nerve-wracking talk with my roommate about the Emergency Glucagon Pen.  As a new president prepares to assume office in January, the continuing evolution of our health care delivery system — from a traditional fee-for-service payment system to a more “value-based” payment arrangement — shows no signs of slowing down.
Given the emphasis being placed on the “value of care” — who defines “value,” how the “value” of individual patient care is being judged and applied and how this assessment could deny access to treatments or services — is what motivated Lung Cancer Alliance and more than 60 groups representing patients and people served by health systems, to write an open letter to state that “value” should first and foremost be considered through the eyes of patients and people with disabilities — who are the ultimate beneficiaries of health care.  As the foundation of the healthcare policy landscape undergoes a tectonic shift that promises to reward “value” in care rather than “volume” of services, stakeholders of all types have cautiously applauded these changes as needed reforms. Yet, when patients see these principles applied – as is the case with a recent Medicare Part B Drug Payment Model – we can’t help but ask: “value to whom?
Health insurers, public and private, should support the provision of care that taxpayers, employers – people – find valuable to optimizing health. However, all too often payer perspectives don’t align with those of patients, caregivers, and clinicians.  I am telling my personal story because on May 26 the Institute for Clinical and Economic Review (ICER), a group that develops cost effectiveness reports for new treatments, held a public meeting in St. Louis about their draft report on the value of multiple myeloma treatments. I feel it is my duty to testify for all patients of this dread disease so that no treatments that demonstrate efficacy should be denied that extend or improve life because of monetary concerns
 My name is Laura Roix, and I’ve been living with idiopathic pulmonary fibrosis (IPF) since 2006. After going through multiple false diagnoses from a number of doctors, I finally found what worked for me: self-advocacy and perseverance. Until I got to that point though, I went through 6 years of difficult medical experiences that finally led me to become a self-advocate for my medical care.
Starting in 2006, I visited a pulmonary doctor after being diagnosed with pneumonia multiple times. The pulmonologist found that I had scar tissue in my lungs, and we monitored it for years. He always said that it wouldn’t spread so not to worry about it – but things quickly changed in 2012. In February of that year, my doctor let me know the scarring had spread; not only in my right lung, where it was originally occurring, but also to the left.  My name is Letitia Browne-James, and I have had epilepsy all my life. Until I started to empower myself about my own care I was unsure that I would ever be cured. After my illness continued to get worse and the seizures more violent while I was trying to live life, I decided to look online for possible solutions because my experience with previous doctors continued to be frustrating and led to dead ends.. Finally, after a few months of research , I was equipped to ask the right questions, to demand better treatment, and even undergo a surgery that I originally didn’t even know existed
 My name is Ronni Marks, and I was first diagnosed with Hepatitis C (HCV) in 1997. Before people began to talk about things like “comparative effectiveness” or “patient-centeredness,” patients like me were just focused on where to go for help. Treatment options back then were painful, protracted, and unpredictable. And while my friends and family tried to support me as best they could, they didn’t understand the enormity of what HCV was or what I was experiencing. At that time, the Internet was new, and there were no HCV support groups.
 The Center for American Progress (CAP) released a report today claiming that the use of Lucentis for the treatment of age-related macular degeneration (AMD) wastes $1 billion a year. If you speak with anyone who has watched a loved one lose their vision to AMD, you would not think that proper treatment of this disease is a “waste.” AMD is a progressive eye disease that predominantly affects older people. In my grandfather’s case, it robbed him of his ability to drive a car and also took away simple joys that kept him connected to the world like reading the newspaper, watching the nightly news and Turner Classic Movies, and even engaging in coffee conversations around the dinner table.
 The American Association of People with Disabilities is a founding member of the Partnership to Improve Patient Care (PIPC), and continue to support the patient-centered principles that drive PIPC’s work. We were pleased to see the introduction of “The Patient-Centered Outcomes Research Act of 2009” and even more pleased to see the Institute finally created by Congress. The AAPD supports the Patient-Centered Outcomes Research Institute’s (PCORI) patient-centered approach to comparative effectiveness research (CER) and the important provisions written into the law which will ensure a continued focus on patient and provider needs and better healthcare quality. As stated so eloquently by PIPC’s Chairman Tony Coelho, we also recognize that access to treatment options is imperative to fulfill the promise of patient-centered CER to improve the quality of health care.
 I am Andrew Sperling, Director of Legislative Advocacy for the National Alliance on Mental Illness (NAMI), and a member of the Steering Committee for the Partnership to Improve Patient Care (PIPC). NAMI is the largest national organization representing individuals living with serious mental illness and their families. Through our more than 1,100 affiliates in all 50 states NAMI is engaged in support, education and advocacy around serious mental illness.
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