5 posts tagged “care”

Compassion for All: Overcoming the Stigma of Mental Illness

Posted July 27th, 2015 by

From our partners and friends at the Schwartz Center for Compassionate Healthcare.

Our partners at Schwartz Center Compassionate Care recently published a paper about how people living with mental illness experience prejudice, and how their doctors can give them better care.

“Overcoming the Stigma of Mental Illness to Ensure Compassionate Care for Patients and Families.”

Read the full paper

-Lisa Halpern, director of recovery services at Vinfen

Over the years, we’ve heard from the PatientsLikeMe community that many living with mental illness experience stigma, so we thought you’d like to know what researchers have to say about how people with mental illness don’t always get the care they need:

“One of the ways people suffering from mental illness are discriminated against in healthcare settings is when patients’ symptoms are over-attributed to their mental illness. The result is that their other health problems can go undiagnosed and untreated.”

Our partnership:
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

Share this post on Twitter and help spread the word.


New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year

Posted April 6th, 2015 by

Remember a time when you were in the hospital or doctor’s office, feeling nervous and anxious about a shot, treatment or diagnosis? And remember there was someone who made you feel safe, answered all your questions, or did something small that had a big impact?

It’s like what Ken Schwartz said during his battle with lung cancer, “These acts of kindness – the simple human touch from my caregivers – have made the unbearable bearable.” Those experiences inspired Ken to create an outline for an organization to promote compassionate care so that patients and their caregivers can relate to one other in a way that provides hope to the patient, support to caregivers and sustenance to the healing process. And just days before his death in 1995, he founded the Schwartz Center for Compassionate Healthcare.

For 16 of the last 20 years the Schwartz Center has been honoring extraordinary professional caregivers and teams who embody characteristics of compassionate care, like listening carefully, showing empathy, instilling hope and more. We’re proud to be partnered with them in their continued efforts. And you can be a part of it, too.

The Schwartz Center is calling for nominations for its National Compassionate Caregiver of the Year (NCCY) award, and you have until May 1 to submit your nomination.

Award-winning author Atul Gawande will present the award at the Kenneth B. Schwartz Compassionate Healthcare Dinner in November, which coincides with the Schwartz Center’s 20thanniversary. His work focuses on the difficult choices caregivers, patients and families face every day and the issues that can make it hard to provide high-quality, cost-effective and compassionate healthcare.

Do something special
If you have special healthcare providers in your life, honor them for their excellence by nominating them for National Compassionate Caregiver of the Year. It’s a simple but powerful way to show your appreciation for a job well (and compassionately) done.

“Receiving the Schwartz Center award … affirmed that rewarding feeling at the end of an encounter with a patient, when you see hope and relief in their eyes – it’s priceless,”  said Thea James, MD, last year’s Schwartz Center Compassionate Caregiver Award recipient.

More about the partnership
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the new alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

Working together, we’ll survey our members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, designed to let healthcare organizations measure and reward the compassionate care that doctors, nurses and other caregivers provide to patients and families. Jointly, we’ll create content to teach patients what compassionate care really is and how to ask for it.

Julie Rosen, executive director of the Schwartz Center, commented on the part PatientsLikeMe will play in evaluating compassionate care:

“As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

Share this post on Twitter and nominate your candidate for Caregiver of the Year.


Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care

Posted April 1st, 2015 by

Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at the Partnership to Improve Patient Care (PIPC). She followed that up with a post on PIPC’s blog and we wanted share what she had to say. Check it out below.

“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.

At the age of 10, I was formally diagnosed with epilepsy, and I spent my life, through school and at work, suffering from seizures that continued to get worse. Years went by with multiple doctors and consults both nationally and internationally, leaving me frustrated and confused because the seizures were no longer appearing on scans and they continued to get more violent and frequent.

Eventually, I began doing my own research about my medical care and joined an online resource for patients called PatientsLikeMe. I learned that there were other options available, such as a 72 hour EEG that could detect what type of seizures I was having. My involvement with PatientsLikeMe eventually led me to find out about an epileptologist – a doctor specializing in epileptic care. My epileptologist performed tests that led him to accurately diagnose the type of seizures I was having. From there, I learned that I was a candidate for epilepsysurgery that I hadn’t heard about since I was about 10-years-old. . Prior to surgery, I asked many questions and went through a series of tests to make sure that surgery was the right procedure for me. And since my surgery in August 2012, I have been seizure free and I feel better than ever.

My experience with the medical care system and my efforts to be an empowered patient taught me a few things. Empowerment includes continuous collaboration and effort, not only from a medical team, but from us, the patients. If you are not happy with the care you are receiving or you feel like something is not right at any point in the process, it is important to empower yourself to research your treatment options, talk to other patients with the same condition to get ideas of what has worked for them as well as social spport, and speak out when you questions about the care being provided to you. The truth is, each patient is different, and every medical team should work for the individual person – not for the diagnosis. Solutions that work for one subset of patients do not necessarily work for all patients; the best treatment for the average patient is not necessarily the best for you.

Throughout my journey to find a solution for epilepsy, I developed my own passion – helping patients know that they do have a voice when it comes to medical decisions. I serve as a patient research advisor with 13 other patients for PatientsLikeMe. This expereince has allowed me to continue my passion in an environment that prioritizes patient-centeredness and patient empowerment. And the results speak for themselves. When patients are engaged in the decision-making process regarding their care, they experience better health outcomes and lower costs, while also developing trust in their providers.

Shared decision-making in the medical process cannot be ignored as the healthcare industry is making decisions on what treatments we should be able to access. Patients have to understand their options and make an active choice in their care to get the most out of their treatment. Patient preferences should matter to our healthcare team. And if it doesn’t, we should be empowered to find a different health care provider. As I’ve often said when speaking about patient empowerment: your doctor may be the expert in medicine, but only you are the expert on you.”

Visit the PIPC’s website to learn more about patient-centeredness and comparitive effectiveness research.


PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

Share this post on Twitter and help spread the word for IPF, epilepsy and patient-centered healthcare.


PatientsLikeMe and the Schwartz Center join forces to better understand patients’ perceptions of compassionate care

Posted December 9th, 2014 by

                            

Collaborators Commit to Sharing Information and Educating Patients

CAMBRIDGE, Mass.—December 9, 2014—PatientsLikeMe and the Schwartz Center for Compassionate Healthcare today announced that they will work together to better understand patients’ perceptions of compassionate care. The collaboration’s goal is to strengthen the relationship between patients and their healthcare providers, which has been associated with better health outcomes, lower costs and increased satisfaction.

Among their work together, the two organizations will survey PatientsLikeMe members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, which the Center hopes healthcare organizations will use to measure and reward the compassionate care doctors, nurses and other caregivers provide to patients and families. They will also jointly develop and distribute content to educate patients about compassionate care and what patients can do to elicit compassion from their caregivers.

“Our research shows that while patients believe compassionate care is critically important to successful medical treatment and can even make a life-or-death difference, only about half of patients believe the U.S. healthcare system is a compassionate one,” said Julie Rosen, executive director of the Schwartz Center. “As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

The Schwartz Center has been working on a multi-question scale that rates patients’ perceptions of the compassionate care they receive from clinicians and other caregivers. To further this work, the collaborators will elicit feedback from patients on how relevant this scale is to their experiences by utilizing the Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues.

“What the Schwartz Center is doing to better measure compassionate care is so inspiring,” said Michael Evers, executive vice president of marketing and patient advocacy at PatientsLikeMe. “This is the type of work that ORE is uniquely positioned to support, and this topic is definitely one about which people using our site will have great perspective.”

Added Rosen, “Our goal is to make compassionate care a healthcare priority and a public expectation. Ultimately, we would like to be able to correlate the compassionate care patients receive with the health outcomes they experience. This is the first step in getting us there.”

About the Schwartz Center for Compassionate Care
The Schwartz Center for Compassionate Healthcare is a patient-founded nonprofit dedicated to nurturing patient and caregiver relationships to strengthen the human connection at the heart of healthcare. Research shows that when caregivers are compassionate, patients do better and are more satisfied, and caregivers find greater meaning in their work and experience less stress and burnout. The Center believes that a strong patient-caregiver relationship characterized by effective communication and emotional support, mutual trust and respect, and the involvement of patients and families in healthcare decisions is fundamental to high-quality healthcare. Visit us at www.theschwartzcenter.org or follow us on Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe® is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contacts
Amanda Dalia
adalia@theschwartzcenter.org
617-724-6763

Margot Carlson Delogne
mcdelogne@patientslikeme.com
781-492-1039