Learning from patients to improve their experiences with treatments – An Inspire Insights: Discover Case Study

By Monica St. Claire

Around 68,000 people in the US are diagnosed with bladder cancer each year.  Since 2007, in partnership with the Bladder Cancer Advocacy Network, Inspire has been providing support to patients and caregivers living with bladder cancer. Today, the Bladder Cancer Advocacy Network Support Community on Inspire has over 32,000 members and an additional 21,320 worldwide visitors per month.

As the leading social networking site in the US, Inspire is home to a total of more than 10 million patient and caregiver-generated posts. Our members’ content is both detailed and relevant. Compared to other platforms, the posts on Inspire contain significantly more characters:  the average number of characters per post on Inspire (1695 characters) is over 16 times as high as the most common post length on Facebook (103 characters). With the number of words on Inspire reaching in the hundreds of millions, Inspire is the largest repository of English-language patient-created content about diseases on the Internet.

In the Bladder Cancer Advocacy Network Support Community on Inspire, postings have grown significantly, reaching a cumulative total of over 42,000 this year.

These postings cover the bladder cancer patient journey, beginning with those who are just diagnosed. Postings from caregivers reveal cancer’s emotional toll.

“My husband was just diagnosed with bladder cancer. Tomorrow we go see the doctor to get more information and to set up the next biopsy which will let us know what stage the cancer is at…All I can say is I’m terrified. My husband is my best friend…I’m scared for his pain and discomfort. I hate the thought of him being so scared…It seems like he’s changed overnight. I’m trying to be strong, but at night when he goes to sleep, I feel so alone and terror consumes me.”

Patients describe not only uncertainty but details of medication availability and real world treatment issues that impact quality of life.

“Just diagnosed with _[bladder cancer]_….I start __ week course of _[medication]__ on ___[date]___ but my urologist only has a 2 week supply on hand, and expects more in 3 weeks. What’s the advisability of starting, stopping, starting ___[medication]___ treatments?  I’m so anxious about possible recurrence and progression.”

Patients and caregivers ask questions about treatment experiences.

“My father is having his 3rd round of ___[medication]___ treatments in a week. In the last treatment he had too much pain. So much that he had to go to the emergency room. Does anyone know how he can avoid this. Most of his pain is the burning he feels all of the time. What can be done for the burning? Is it normal to have extreme burning?”

And they receive specific answers based on experience from others with the same diagnosis.

“ask your father’s doc if he can dilute the _[medication]__ and use only half strength. I believe there are many on this board who use 1/4 or less strength

is your father with a bc specialist?”

In this case, another patient supplied more strategies that have been used by their physicians to address side effects.

“If the burning is in the urethra, it may be that the catheter was inserted without

first injecting Lidocaine. Also the size of the catheter could be changed. Smaller diameter may cause less abrasion. And with a coude tip the prostate transition can be easier. Plus, relaxing the urinary sphincter muscle as the catheter passes the prosthetic area will lessen discomfort.”

Patients also discuss recurrences of bladder cancer and follow-up treatments.

“This is beginning to get a bit old. I was first diagnosed in __[date]__, and had my kidney removed in __[date]___. I had a recurrence in _[date]_, and another in _[date]_. Today, I found out it has come back yet again. The spring/summer months have not been kind to me these past few years. The “good” news is that it has come back in a new spot in my bladder. After the eight most painful weeks of my life last _[date]__, I’m glad it stayed away from the bladder neck.”

This patient shared her experience with a recurrence and received over 90 responses.

“I suffered for over a YEAR with blood in my urine, including clots. I was told by several different doctors that it was a bladder or kidney infection. Finally, I was tested and it was found to be cancer. I had my TURBT on __[date]__, and was assured they “got it all”. I went yesterday (_[date]_)  for my first follow-up cystoscopy, and the cancer had returned. I am now scheduled for my second surgery on _[date]_. Is anyone aware of the recurrence rate for bladder cancer? My doctor seems to think, since it was near or at the site of the last tumor, that it isn’t a “new” cancer, but that some cells were left-over from the last surgery. Either way, I’m not a happy camper. Anyone else with bladder cancer that recurred this quickly? (Now I understand why they want the cystoscopy every 3 months after the surgery for 2 years! I’m so happy I didn’t “blow it off”.)”

Our research team can provide clients with a clear understanding of the patient journey through our social listening product line, Inspire Insights: Discover.

Inspire Insights: Discover

Inspire Insights: Discover is a new offering from Inspire created to forward our mission to accelerate medical progress through a world of connected patients. As leading experts in online healthcare community activity and content, Inspire’s research team leverages advanced analytics and sociolinguistic-based approaches to gather, identify, and analyze authentic and unstructured patient and caregiver social media content. Our methodologies, proprietary data sets, and our in-house expertise results in a consistent elevation and delivery of real world experience (RWE).  Language, and insights that can often be overlooked with more traditional research methods or data make up the findings that our clients receive.

Discover includes an expansion into open-source social media listening. This addition makes Inspire the only organization able to conduct deep-dive or tracking research that includes both Inspire proprietary community content and the top, key sources of publicly available healthcare social media activity.

Within Discover, clients can choose between three offerings.

Social Landscape:

These custom, deep-dive research projects leverage patient-reported, real world data from social media to answer and inform a broad range of medical research, marketing, strategic or digital questions and objectives. We use Inspire’s proprietary social media database and content from the top and key sources of condition-specific activity on open-source or publicly-available social media. We can typically deliver these projects in 4-6 weeks, from kick-off to delivery, depending on scope and other factors.

Strategic Deep Dive:

These are custom, focused, research projects that address between three and five questions using Inspire patient content and the most relevant patient content from open source social media.

Monthly, Quarterly or Semi-Annual Discovering Subscription:

Inspire offers longitudinal and tracking research and analytics to track key topics and explore the  patient/caregiver experience over time. Clients can also add this offering as a high level update to a Social Landscape to continue to monitor their question/answer over time.

To learn more about Inspire Insights: Discover read our case study: Inspire Insights: Discover Provides Previously Unknown Patient Insights with Implications for Product Use.

See our case study, Inspire Insights: Discover Provides Previously Unknown Patient Insights with Implications for Product Use

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