5 posts tagged “Schwartz Center for Compassionate Healthcare”

The power of your data: Members define compassionate care

Posted December 5th, 2016 by

For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Here’s a snapshot of your data in action.

Let’s talk compassionate care. Our partners at the Schwartz Center for Compassionate Healthcare had developed a scale based on input from 510 patients, 800 doctors and other caregivers to define compassionate care. But they wanted feedback from PatientsLikeMe members to validate this work and make sure it really reflected the patient voice. Every day, members like you team up with us and our partners, adding your experience to help improve measures just like this one.

So, how did it go? First,  members first shared what compassionate care means to them and if they thought the scale could be improved, and then a second group helped to see if the scale measured compassionate care and if it did so consistently.

Here are some top takeaways:

23 members weighed in on the first phase of the project, defining compassionate care.

Quick research insight: you might be wondering, “why only 23 members?” Well, the first phase of a project like this is sometimes called concept elicitation. That’s just a fancy way of saying you’re getting open ended responses from people, and not having them check an answer box. When that kind of research is done, fewer responses are needed to capture the main ideas.

How do members define compassionate care?

  • Many shared that continuity of care and communication between their providers made a difference in whether they felt they received compassionate care.

Need an example? Here it is again in members’ own words:

“I had two surgeries within days of each. Therefore, two different surgeons handling my care. One was incredibly compassionate, the other, not so compassionate.” – PatientsLikeMe member

I believe that too many cooks in the kitchen spoil the soup. I have a PCP, Cardiologist and a couple of other specialists involved in my care. When I get very sick, I am told to go to the ER. No one in the ER knows me and it is frustrating and cannot be safe. Tell a same story to 5 different people and you will get back at the end another completely different story from each one. A person should be able to have their own doctor manage their care, available to take over.” – PatientsLikeMe member

How can this scale be improved?

  • Many understood the questions, but felt they sometimes either didn’t apply to their situation, or they thought that their situation was difficult to summarize.
  • For those with multiple doctors and/or conditions, they found it difficult to decide who or which condition they should evaluate:

“State explicitly who we are rating…the clinician in charge of our last hospitalization or the clinician we normally see to treat our illness.  It is often different people, as it was in my case.” – PatientsLikeMe member

  • While they found the wording of some questions unclear, overall, members thought that the Schwartz Center Compassionate Care Scale did reflect what matters most to them.

For the second part of the research project, we asked members to actually answer and complete the measure. 

163 responded to the questions. How they answered helped us understand if the Schwartz Center Compassionate Care Scale measured compassionate care, and if it measured it consistently.

Leading the way (not always a good thing)

40% responded in the higher, positive range when asked if their healthcare provider “treated you as a person, not just as a disease” and whether they “showed respect for you, your family and those important to you.”

FYI: Sometimes when a large proportion of people answer the same response option on a questionnaire, it may indicate that the question is asked in a way that could lead people to answer a certain way, or it could mean that there are too many response options for a question. We’ll have to do some more testing to confirm if this is the case.

On a solid foundation

The measure was found to have good measurement properties, meaning that the different items seem to “hang well” together and to measure the same concept. Members also answered consistently when asked to complete the questionnaire twice.

Making some tweaks

But there’s always room for improvement, like taking another look at the response options for the questions. It may be that there are too many answers to choose from for the questions. Or the measure could also be improved by adding questions measuring the lowest levels of compassionate care.

The gist of it: Your voice matters in research – whether validating a measure like this one, giving feedback on a potential clinical trial or shedding light on life with your condition – there’s nothing like real patient data to affect positive changes in healthcare.

Thanks to all who participated and put the patient perspective into compassionate care!



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2016 National Compassionate Caregiver of the Year Award now accepting nominations

Posted February 26th, 2016 by

A warm smile. An assuring word. A difficult message delivered with empathy. Has a doctor or other healthcare professional ever made a difference in your life? If you know someone who embodies compassionate care, our partners at The Schwartz Center for Compassionate Healthcare want to hear about it.

Their National Compassionate Caregiver of the Year (NCCY) Award recognizes those who make a profound difference through their unmatched dedication to compassionate, collaborative care – or as Ken Schwartz has said, whose “acts of kindness have made the unbearable bearable.”

Last year we profiled all six finalists, including Rick Boyte, MD, who received the award. At the Annual Kenneth B. Schwartz Compassionate Healthcare dinner in Boston, Dr. Boyte spoke of his patients and their families while accepting the honor, “They are my heroes and the most courageous people I’ve ever met. They’re just getting through their lives. And the love and devotion I’ve seen from families is amazing.”

For this 17th annual year of the NCCY Award, you and others once again have the chance to put forth the name of a caregiver whose caring and compassion has made your health journey a better one.

The nomination deadline is March 31, 2016.


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Compassion for all: Adrianne shares how friendship grew from the life-altering Boston Marathon Bombing

Posted May 8th, 2015 by

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

In 2013, Adrianne joined the Schwartz Center in honoring the caregivers who saved her life after she was injured in the Boston Marathon Bombing, including a special thank you to Jeff Kalish, MD, of Boston Medical Center who performed her surgeries. Research shows that compassion is great medicine, enabling patients to thrive, caregivers to rediscover their passion for healing, and health systems to prosper – click below learn how Adrianne survived and is thriving because of compassionate care.

2014 recap – part II

Posted December 30th, 2014 by

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.

At PatientsLikeMe
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:

  • We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
  • Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
  • The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
  • We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
  • Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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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.

Amanda Dalia

Margot Carlson Delogne