177 results for “open data”

PatientsLikeMeOnCall: From Open Data to Actionable Data

Posted July 22nd, 2011 by

Pillbox's Rapid Identification System for Unknown Pills

Every Friday, PatientsLikeMe holds “Journal Club” in our Boston headquarters with a different guest speaker. Last week we were privileged to hear from Dave Hale, Project Manager for Pillbox, a National Library of Medicine (NLM) and Federal Drug Administration (FDA) patient safety initiative. And thanks to PatientsLikeMeOnCall’s new podcast series “It’s Friday – Let’s Journal Club,” you’ll get to hear from him too.

After Journal Club last week, PatientsLikeMe’s Aaron Fleishman sat down with Hale to learn more about Pillbox’s goal of creating a one-stop resource for identifying unknown pills as well as how the project aligns with the Open Government Initiative enacted by President Obama. Tune in below to hear how Hale and his team took drug labeling data from “open to actionable” by listening closely to affected communities.


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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