Posts Tagged ‘patient experience’

Live Notes from @AACR’s #cbi16 Meeting on Precision Medicine: 5:10PM Big Idea A survivor’s Story

Tom Whitehead, father of Emily, CHOP’S first CAR-T success story

Reporter: Stephen J. Williams, Ph.D.

  • Emily Whitehead was 5 years old when came to UPENN and CHOP (2010) with unresponsive leukemia
  • she was healthy up to day she was diagnosed and went to Hershey Medical Center and recieved diagnosis of CLL (came in with 21 bruises, symptom of leukemia)
  • parents told her that it would be the roughest time of her life but they would always tell her the truth about what would happen
  • she started to have relapsed disease
  • Dr. Sue Reingold at CHOP said to get transplant but could do at Hershey
  • Feb. 2012 thought got a matching donor but up to May did not find one, they wanted to do new rounds of chemo but Emily did not want that and CHOP suggested a new drug but they felt it was not right for her


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Patient Experience Survey

Larry H. Bernstein, MD, FCAP, Curator


Survey of patients’ experiences (HCAHPS)


  • The HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) Survey, also known as the CAHPS® Hospital Survey or Hospital CAHPS®, is a standardized survey instrument and data collection methodology that has been in use since 2006 to measure patients’ perspectives of hospital care. A partnership of public and private organizations led by the Federal government, specifically the Centers for Medicare & Medicaid Services (CMS)– Opens in a new window and the Agency for Healthcare Research and Quality (AHRQ)– Opens in a new window, created HCAHPS (pronounced “H-caps”) to publicly report the patient’s perspective of hospital care. The HCAHPS results posted on Hospital Compare allow consumers to make fair and objective comparisons between hospitals and with state and national averages on important measures of patients’ perspectives of care.
  • The survey asks a random sample of recently discharged adult patients to give feedback about topics like how well nurses and doctors communicated, how responsive hospital staff were to patient needs, how well the hospital managed patients’ pain, and the cleanliness and quietness of the hospital environment. Patients are the best sources of information on these topics.
  • The table below lists the topics and questions included in the survey. Patients are able to respond by answering “never,” “sometimes,” “usually,” or “always” to most of the survey questions. Hospitals that are rated well have higher percentages of patients who chose the most positive response option, like “always,” to the survey questions.
Survey topic Survey question
1) How often did nurses communicate well with patients? During this hospital stay…

  • How often did nurses treat you with courtesy and respect?
  • How often did nurses listen carefully to you?
  • How often did nurses explain things in a way you could understand?
2) How often did doctors communicate well with patients? During this hospital stay…

  • How often did doctors treat you with courtesy and respect?
  • How often did doctors listen carefully to you?
  • How often did doctors explain things in a way you could understand?
3) How often did patients receive help quickly from hospital staff? During this hospital stay…

  • How often did you get help as soon as you wanted after you pressed the call button?
  • How often did you get help in getting to the bathroom or in using a bedpan as soon as you wanted?
4) How often was patients’ pain well controlled? During this hospital stay…

  • How often was your pain well controlled?
  • How often did the hospital staff do everything they could to help you with your pain?
5) How often did staff explain about medicines before giving them to patients? Before giving you any new medicine…

  • How often did hospital staff tell you what the medicine was for?
  • How often did hospital staff describe possible side effects in a way you could understand?
6) How often were the patients’ rooms and bathrooms kept clean? During this hospital stay…

  • How often were your room and bathroom kept clean?
7) How often was the area around patients’ rooms kept quiet at night? During this hospital stay…

  • How often was the area around your room quiet at night?
8) Were patients given information about what to do during their recovery at home? During this hospital stay…

  • Did hospital staff talk with you about whether you would have the help you needed when you left the hospital?
  • Did you get information in writing about what symptoms or health problems to look out for after you left the hospital?
9) How well did patients understand the type of care they would need after leaving the hospital? During this hospital stay…

  • Did hospital staff consider your health care options and wishes when deciding what kind of care you would need after leaving the hospital?
  • Did you and/or your caregivers understand what you would have to do to take care of yourself after leaving the hospital?
  • Did you know what medications you would be taking and why you would be taking them after leaving the hospital?
10) How do patients rate the hospital overall? What number would you use to rate this hospital during your stay?
11) Would patients recommend the hospital to friends and family? Would you recommend this hospital to your friends and family?

For more information about HCAHPS, see About the data– Opens in a new window, the HCAHPS page– Opens in a new window on the CMS website or

the official HCAHPS website, www.hcahpsonline.org– Opens in a new window External Link icon.

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Twitter Offers Valuable Insights Into The Experience Of MRI Patients, Charles Sturt University Study

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Twitter offers valuable insights into the experience of MRI patients

Tweets can give medical professionals a window into the minds of patients, according to a new study published in the Journal of Medical Imaging and Radiation Sciences

Philadelphia, PA, October 28, 2015 – Magnetic Resonance Imaging (MRI) can be a stressful experience for many people, but clinicians have few ways to track the thoughts and feelings of their patients regarding this procedure. While the social networking site Twitter is known for breaking news and celebrity tweets, it may also prove to be a valuable feedback tool for medical professionals looking to improve the patient experience, according to a new study published in the December issue of the Journal of Medical Imaging and Radiation Sciences.

Johnathan Hewis, MSc, PgCert (LTHE), PgCert (BE), BSc Hon, an investigator from Charles Sturt University in Australia, analyzed 464 tweets related to MRI over the course of one month and found that patients, their friends, and family members were sharing their thoughts and feelings about all aspects of the procedure through the microblogging site. Tweets were categorized into three themes: MRI appointment, scan experience, and diagnosis.

Twitter is a giant in the social media space. In 2014, 19% of the entire adult population of the U.S. used Twitter, with almost 90% of those individuals accessing the service from their mobile phones. Because it is so ubiquitous, Twitter can provide crucial new insights to which practitioners would otherwise not be privy. In the study, patients expressed anxiety about many aspects of the process, including a lot of stress over the possibility of bad news. “The findings of this study indicate that anticipatory anxiety can manifest over an extended time period and that the focus can shift and change along the MRI journey,” explained Hewis. “An appreciation of anxiety related to results is an important clinical consideration for MRI facilities and referrers.”

The study found that tweets encapsulated patient thoughts about many other parts of the procedure including the cost, the feelings of claustrophobia, having to keep still during the scan, and the sound the MRI machine makes. One particularly memorable tweet about the sound read, “Ugh, having an MRI is like being inside a pissed off fax machine!”

Not all the tweets were centered around stress. Many friends and family members expressed sentiments of support including prayers and offering messages of strength. Some patients used Twitter to praise their healthcare team or give thanks for good results. Others spoke about the fact they liked having an MRI because it gave them some time to themselves or offered them a chance to nap.

Twitter isn’t just words, it’s also a way to share pictures. “An unexpected discovery of the examination preparation process was the ‘MRI gown selfie,'” revealed Hewis. “Fifteen patients tweeted a self-portrait photograph taken inside the changing cubicle while posing in their MRI gown/scrubs. Anecdotally, the ‘MRI gown selfie’ seemed to transcend age.”

During the course of his analysis, Hewis discovered that many patients took issue with the fact that they were not allowed to select the music they listened to during the MRI. “Music choice,” said Hewis, “is a simple intervention that can provide familiarity within a ‘terrifying’ environment.’ The findings of this study reinforce the ‘good practice’ of enabling patients’ choice of music, which may alleviate procedural anxiety.”

With such a broad reach, social networks like Twitter offer medical practitioners the opportunity to access previously unavailable information from their patients, which can help them continuously improve the MRI experience. “MRI patients do tweet about their experiences and these correlate with published findings employing more traditional participant recruitment methods,” concluded Hewis. “This study demonstrates the potential use of Twitter as a viable platform to conduct research into the patient experience within the medical radiation sciences.”

Media Contact

Chris Baumle

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