Channeling My Rare Disease Patient Experience Into Action and Understanding
Patient Experience,
Patient Advocacy,
Rare Disease

Channeling My Rare Disease Patient Experience Into Action and Understanding

Nisha Trivedi
Posted by Nisha Trivedi, February 27, 2023
I was born with Epidermolysis Bullosa (EB), a rare genetic disorder characterized by very fragile skin—a key protein that binds the layers of skin together is missing. 
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February 20, 2023 • 6 min read
10 Lessons From Brain Surgery

I was on the Amtrak from DC to NYC when I got the call, it was my neurosurgeon calling with the results of my tumor biopsy. "Well, we have sent the sample off to the top pathology labs in the country and everyone is scratching their heads,” he said. "We won't know for sure unless it grows back." ...

Patient Insights, Patient Experience
By Jen Horonjeff
April 03, 2022 • 6 min read
5 Questions to Consider When It Comes to Patient Research

There is no shortage of areas to improve in healthcare. Some areas that are in need of improvement are due to the fact that certain products or systems prioritize other stakeholders over patients, whereas others are due for an update because as the world has changed, so too has the patient ...

Patient Insights, Patient Experience
By Jen Horonjeff
October 14, 2021 • 7 min read
So you want to conduct in-depth patient interviews. What should you ask?

This is the third part of a multi-part series on in-depth interviews for gathering patient insights. While each part is intended to be standalone, you can read previous entries here (Intro to Patient Insights, part 1, part 2). Enjoy!

Patient Insights, Research, In-depth Interviews
By Jahed Momand
September 09, 2021 • 4 min read
Collecting Virtual Patient Insights: From Inclusivity to Cost Savings

I've been having a lot of catch up calls lately. You know, the ones with folks you haven't connected with for the past 18 months asking in a quasi-tactful way "how has the pandemic impacted your business?"

Patient Insights, Patient Engagement, Research
By Jen Horonjeff
September 01, 2021 • 9 min read
Research Methodologies: How do you #AskPatients?

This is part 2 of a series on how to ask patients. While all parts are intended to be stand-alone, you might find reading part 1 useful before diving in. Enjoy! In our last post, we broke down the importance of clearly defining your objectives and the research questions you are looking to answer. ...

Patient Insights, Patient Engagement, Research, Methodology
By Jahed Momand
August 23, 2021 • 5 min read
Start from the End - Research Questions, Objectives, and Decisions

This is the first part of a multi-part series on how to do patient insights research. Read the introduction here.

Patient Insights, Patient Engagement, Research
By Jahed Momand