Pharma Needs to Think Carefully How They Wish to Interact with Patients

Just discovered that my Pecha Kucha presentation given at the e-Patient Connections conference in Philadelphia last September 2010 was indeed posted online. Thanks Kevin Kru.

The title of the talk was "Through the Looking Glass - A Patient's View of Interacting with Pharma." It was given in a very organized fashion. Only 20 slides which were each displayed for 20 seconds. At the end of the last slide, the presentation was complete.



Gotta admit - doesn't look/sound too shabby.

Patient Participation in Clinical Trials

So you are thinking about whether to participate in a clinical trial? There is much to know in making your decision. In the past few weeks, we have been discussing many of the the important things you need to know (see Part One and Part Two). In this post, we will explore aspects of participating in a clinical trial.

As often promoted, patients who participate in clinical trials may gain access to new treatments before they are widely available, help others by contributing to medical research, and receive trial-related medical care. But not everybody is eligible to participate in any clinical trial. There are inclusion/exclusion criteria which come into play based on such factors as "age, gender, the type and stage of a disease, previous treatment history, and whether you have other medical conditions."

Inclusion/exclusion criteria make sure that researchers will be able to answer the specific questions posed in the trial protocol. Some research studies need participants with specific illnesses or conditions to be studied in the clinical trial, while others need healthy participants.

Read this post in its entirety:

Clinical Trials III: Patient Participation

Blogs are Powerful Tools

As MS patients, we do a great service to others by simply talking about our experiences living with this disease. Blogs can be powerful and empowering.

I received the following comment at MultipleSclerosisCentral.com. If you have ever used Solumedrol infusions and had the yucky, penny taste side-effect, then you can appreciate the significance of finding firsthand knowledge regarding that experience.

Just introduced to Lisa and this site while having my steroid infusions this week (had it done about a year ago and this is my second try). I told the nurse, who called the Dr about the immediate metallic taste. Both said they had never heard of it! I also had it last year. The nurse passed this on to the hospital druggist who also said she had never heard if it.

Well, on my second morning of treatment this week, she came up to me with pages printed up from Lisa Emrich and The Beginners Guide to Solumedrol! So nice to know I was not imaging this! What a wonderful thing that this woman took the time to google this and come to me. So I have come equipped with my Jolly Ranchers which truly helped!

Was dx'd 13 years ago, but for most of those years took my Avonex shot every week, but did not really affect my daily life. Now I have to use the cane always and MS is really a part of my life. BUT I WILL NOT MAKE IT MY TOTAL LIFE!!

Makes me feel useful and helpful. :)

Educate, Encourage, Empower

Recently, I was invited to travel to HealthCentral’s New York office to participate in an on-camera interview as part of Johnson & Johnson’s global video campaign. Joining me were three other Patient Experts from different HealthCentral sites. I can't recall verbatim everything we talked about, but here are some questions and thoughts I had discussed that I'd like to share with you:

1. How important is it for patients and/or caregivers to become active participants in their health care?

It is imperative that we, as patients, take an active role in our own health care, which includes educating ourselves, working with our medical providers in making appropriate decisions, and following through with treatment choices. After all, it is your own body, mind, and spirit that is at stake as well as your current and future health.

2. How has the Internet served to empower patients when it comes to managing their health?

The power of the internet lies in the immediate access to information that provides an individual with a wide variety of opinions and facts when it comes to managing their health or illness. Whether from the National Institutes of Health, the Arthritis Foundation, the Johns Hopkins Arthritis Center, the National Multiple Sclerosis Society, or patient blogs and online health communities, reliable information and personal support ultimately empower patients in making their own choices.

3. What is it that motivates you to join the conversation with online health seekers?

Please read this post in its entirety and leave your own thoughts:

The Power of the Patient: Educate, Encourage, Empower