Researching Treatment Options in Online Communities Impacts Decision-Making

By Kathleen Hoffman, PhD, MSPH

Inspire members don’t just give each other encouragement – they often educate each other through their posts, and take new information to their own doctors. Some members have even found specialists in their conditions and chosen doctors and treatments based on what they learned from the Inspire community. Here are posts from some members talking about their experiences.

Today I had another one of those 10-15 minute protocol meetings with my onc [oncologist] as I approach the end of yet another round on ______ as first line treatment.

… he [told] my wife and I that he found a clinical trial he feels confident about referring his patients to… I said, “are you referring to the Anti-PD1 trials”? He did a double take and said “how did you know that”? I just said, “I do my research”, but the truth is I found out about Anti-PD1 and looked into it due to discussions on Inspire…

…thanks to Inspire I retained my onc’s respect. He turned to my wife and said, ‘I have about 1000 patients, just think what my job would be like if they were all like him.’

I would not be nearly as far along participating as much as possible in my own care without the knowledge I have gotten on Inspire, as much by reading the painful floundering of newbys and their caregivers as well as the cool, reasoned logic of the [veterans], and science based info from … others.” – Inspire member

Another member replied,

“…I know the look I used to get from [my husband’s] onc too. It’s good feeling indeed! …Targeted therapy docs just couldn’t believe I knew about Exon 19, Tarceva, Xalkori, and others, but I too, must give credit to our pals on inspire, I wouldn’t have learned without all of you!”

In another discussion, when the topic was “How do you make medical decisions?,” two members replied that they looked to Inspire as a source:

“I listened to the doctor, nurses, talked to other patients, … and a number of members of Inspire helped me understand my options. I followed what made me feel the most comfortable. I sifted through, decided on my treatment plan. Luckily my oncologist and I were together on what would work out best.” – Inspire member

The second replied:

” … I may post a few questions on a patient board to ask others who have the condition… I will then go back to the doctor and discuss my findings and the decision I am leaning towards.” – Inspire member

This member chose a specialist based on what she learned from another member:

“I want to also thank [Inspire member’s user name]. I went to her MD… I decided, after reading these threads to set an appointment with [him]… So much confidence in his knowledge and ability. Worth the search for a good MD and the wait for an appointment.” – Inspire member

Another member followed her to the same specialist:

“I learned about [this specialist’s] work on this forum… The evaluation experience was the best I have ever had… Without question, this forum has helped me more than I could have ever expected it to. If it were not for [member user name] I wouldn’t have known that my scans were filled with errors. I wouldn’t have had the benefit of his expertise to teach me about DXA scans. And, I certainly would have never learned about [specialist].” – Inspire member

After a member thanked another member, who happens to be an RN, for her explanation of a few different medications for a condition they share, she replied:

“Everything I’ve learned I owe to the information and experiences shared here by the knowledgeable regulars and from the questions everyone asks. Despite being an RN, I knew zilch about [my condition] and meds two years ago… We can’t give ‘medical advice’ but can provide suggestion[s] to discuss with your doctor. …We have a lot more responsibility as patients than we did fifty or even just fifteen years ago.”
– Inspire member

Patients and caregivers look to each other for help, and what they learn influences their choices – from simple solutions to alleviate symptoms to finding clinical trials and specialists. Inspire provides a safe space that allows members to be with their peers on the patient journey.

Download our case study: “Researching Treatment Options in Online Community Forums and Healthcare Decision-making”