October 2012 - Amyloidosis Community Newsletter

Ben_Munoz · October 24, 2012, 4:20am

Dear Friends and Family of Amyloidosis,

“An informed patient is an empowered patient.”

These buzzwords have been around for a while: journalists have shared their penny’s worth in the discussion, non-profits advocated it as part of patient rights, and even government and the academe have joined in the chorus line harping on its merits.

But no other people, I believe, can understand the power in those words than patients of rare diseases themselves. You are the ones who have often groped for answers; you are the ones entrusting life to a health care team who are, at times, equally in the dark.

But, while trusted experts are certainly an essential part of your recovery, your role in your care is no less critical. So let me share how you can become a better informed patient and, therefore, an empowered patient.

Create an Environment of Trust
Talk about what matters to you. Ask questions. Share your beliefs and preferences. This will create an environment of openness and trust where information, ANY information, no matter how mundane or seemingly irrelevant, is welcome.

Educate Yourself
Write down what has been discussed and validate the information. Share your findings with your health care provider. Do it as often as you can.

Health care providers — Doctors, therapists and nurses are the most responsible group for educating patients about their condition including available options for treatment, if any, and their advantages and pitfalls.
Personal Research — To an extent possible, patients can further their education by researching information about their condition, share these with the health care providers and discuss the options candidly.
Support Community — Patient communities such as what we have is a wellspring of experiences where people who “have been there, don that” can provide insight on your condition.

Working with a Team
Effective patient empowerment requires team effort. Your team consists of:

Your Family — Take along a friend or family when you visit your health care provider. They can listen, take note, or remember information while you are busy with your doctor or nurse.
Your Health Care Provider — Your care team’s responsibility is to provide education; yours is to make sure you understand the information.
Fellow Patients — There is strength in numbers is not an understatement. Keep in constant touch with your support community. Add your voice for your community to be heard.

Get Organized
Ensure effective communication between you and your team. Assign a doctor or nurse as your health care coordinator. Keep a journal where you can write important points, write a list of medications and monitor effects, even record any questions that come to mind anytime and don’t forget to bring the list when you go visit your doctor.

Patient Empowerment—Why?
Think about the benefits. Your confidence in the medicines and the procedures you are on grows. “If you don’t have a belief that something may work, you’re not going to do as well as when you have been involved in the decision making,” explained Dr. Joel Granick, a medical oncologist at Cancer Treatment Centers of America (CTCA) in Goodyear, Arizona. “Patients who are involved in choosing their treatment are more likely to believe that their plan will be effective.”

Patient empowerment also increases the degree of compliance with the treatment plan. Being involved in the decision making, even having ownership over it, you’ll understand the importance of your plan and be more likely to follow it.

What is also remarkable about patient empowerment is the impact it has on your care considering the relatively little effort required on your part: to be informed, all you have to do is ask!

How Ben’s Friends Promote Patient Empowerment
Our communities have never been stronger as we are now as you can see in the steadily increasing figures below. Your contributions to every discussion have brought about confidence to every member to ask, validate, and process information with health care providers. We continue to find partners in like minded organizations. The 2nd.MD and RareGenomics, for example provide youFREE access to expert information; Advocacy for Patients with Chronic Illnessesguides you as you navigate legal paths for your care; and, a steady stream of financial advise and support through GoFundMe, Friends of Treasure and The Disability Digest.

And with a wonderful team of community moderators hailed from among your ranks, you can be assured of care and support from people who really understand your situations.

Ben

IN THIS ISSUE

-———————————————————————————————————

Welcome New Members

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

Ben’s Friends and RareGenomics Podcasts

Ben's Friends and RareGenomics Podcasts Interview Series

John and Corrine Run in Marathon 2012

John Raises Campaign for BensFriends.org

Ben’s Friends Tops Symplur Healthcare Social Media Analytics

Milestone: Chiari Malformation Community Reaches 1500+ Members!

Milestone: Living with Ataxia Community Reaches 1000+ Members!

Why I love Ben’s Friends – The Ben’s Friends Spirit

AMYLOIDOSIS COMMUNITY HIGHLIGHTS

Topic		Replies	Views
November 2012 - Amyloidosis Community Newsletter News	0	2117	November 27, 2012
May 2012 AmyloidosisSupport Community Newsletter News	0	1974	May 25, 2012
May 2013 Community Newsletter News	0	2147	May 24, 2013
New Amyloidosis Awareness Booklet General	4	2005	October 25, 2013
Do You Feel Like Your Physician Has Educated You Enough? General	1	2417	October 21, 2015

October 2012 - Amyloidosis Community Newsletter

Ben

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