Patient Education Committee Update

The Patient Education Committee has been busy in recent months! Some of the projects we’re working on or planning include:

Caregiver education:

We will develop guides to help family members, and friends know when patients need help and what steps (emergency room, call the doctor, additional medications) to take if they do.

Decision making:

• Understanding medical strategies: We will develop materials to help patients understand how doctors make medical decisions. For example, how do they decide to recommend (or not recommend) an ICD implantation or myectomy? And how should patients make their own decisions about these recommendations?
• Personal decisions that are affected by HCM: Many decisions HCM patients need to make aren’t one-size-fits-all. For example, should I have a child? Should I accept the offer of a job with physical challenges? We will be developing materials aimed at helping think out these decisions by examining their consequences, using decision trees.

There are a number of other things in the hopper. We are discussing ways to use new forums and new approaches to reach people who may have HCM. And in the not-too-distant future, watch for an update on our website! We are always happy to listen to suggestions, whether big (new projects) or small (say, an error on the website).

If there is a resource that you would find helpful, please email elena@4hcm.org, and she will forward it to the HCMA Patient Education Committee.