Harnessing Community Resources to Support Rural Myelofibrosis Patients

Harnessing Community Resources to Support Rural Myelofibrosis Patients

How can community resources be utilized to support rural myelofibrosis patients? Expert Dr. Michael Grunwald from Levine Cancer Institute shares his perspective and how conversations with providers can be enriched.

[ACT]IVATION TIP

“…while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.”

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Transcript:

Lisa Hatfield:

Dr. Grunwald, what role can community resources play in supporting rural myelofibrosis patients, and how can they be effectively utilized?

Dr. Michael Grunwald:

Thanks for that question, Lisa. I’ve found that the MPN community is very strong. Patients meet in-person at patient advocacy events sometimes. There are powerful online forums for patients to communicate and teach one another and learn from one another.

Frequently, patients have helpful advice for other patients, and it can be helpful to share experiences. While patients can’t always trust everything that they hear from word of mouth or online, I find that a lot of times patients bring to me very interesting questions about their disease and observations about their disease that are informed by connecting with other patients.

And I think that those connections are available to most patients nowadays. Most of our patients, regardless of where they live and regardless of their access to healthcare, most of them have some sort of device, whether it’s a smartphone or a tablet or a computer where they can interact with others if they are not able to find an in-person forum to meet other patients.

My [ACT]IVATION tip for this question is that while one cannot trust everything one learns online, oftentimes online communities can point patients toward helpful questions that enrich the conversations they have with their providers.


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