PATIENT EMPOWERMENT

>>  ​Advocating for the Ocular Melanoma Medical Care You Want

The authors of the 2018 medical journal article entitled "The Patient’s Experience of Ocular Melanoma in the US, which reports on survey findings by the Ocular Melanoma Foundation, propose "20 standards of care for patients with ocular melanoma as a basis for discussion and refinement." [This printable list can be found on the 7th page of the article, which is labeled as page 286 – table 3).] 

Also:

• "Why Advocacy is Important for Patients with Ocular Melanoma" (Melody Burchett, A Cure in Sight Founder; 2024 AOMA Summit; 25-minute video)
• "Self-Advocacy as an Ocular Melanoma Patient" (Molly Vocino, LCSW and Monika Zurowski, BSW; 2023 CURE OM Symposium; 45-minute video)
• "Self-Advocacy for Ocular Melanoma Patients in a Medical Setting" (Amanda Sisco, CURE OM Advocate; 2020 CURE OM Symposium; 30-minute video)

>>  ​Discussing Your OM Diagnosis and Treatment Options With Your Doctors

Writing down in advance what you want to discuss can help lower your stress level. Need some help getting started? Want to make sure you haven't missed an important topic?  

• CURE OM has created a one-page handout of Questions to Ask Your Doctors — for Primary OM and for Metastatic OM.
• A list of "Questions to Ask" is also available in almost all the Ocular Melanoma Guides for Patients shown at the beginning of EyeMelanoma.org's Diagnosis and Treatment webpage.
• "How to Prepare for Your Ocular Oncology and All Doctor Visits" (Ocular Oncologist Tara McCannel's Finding Your Way with Ocular Melanoma Podcast; February 2025; 15-minute episode).

>>  ​Seeking a Second Opinion for Ocular Melanoma Treatment Options

• The American Cancer Society tells patients that "when you’re facing cancer treatment, it’s normal to wonder if another doctor could offer more information or a different treatment option. [...] Getting a second opinion can help you feel more sure about your diagnosis and treatment plan." On ACS' Seeking a Second Opinion webpage, topics include: "Why Get a Second Opinion?," "How to Talk to Your Doctor About Getting a Second Opinion," and "The Second Opinion Process: What to Expect."
• "Ocular Melanoma: Getting a Second Opinion" (Ocular Oncologist Tara McCannel's Finding Your Way with Ocular Melanoma Podcast; May 2024; 15-minute episode).

​>>  Becoming More Tech-Savvy Online for Your Healthcare Needs — Patient Empowerment Network

PEN's online course, called Digitally Empowered, includes topics such as "Navigating Healthcare Resources Online," "The Social Media Experience," "Navigating Your Health with Electronic Devices," "Using Telemedicine," "Your Digital Safety," and "Tips for Online Re(Search)." You can return any time and use your login to pick up where you left off. (Also available in Spanish.) 

​>>  Creating a Cancer Care Plan — National Coalition for Cancer Survivorship

"Cancer Care Plans should have three parts: Treatment Plan (to discuss before you begin treatment), Treatment Summary (to be provided once you transition off of active treatment), and Follow-Up Survivorship Care Plan (to help map out your follow-up care when you have completed treatment)." Information includes Care Plan templates.

>>  Managing Side Effects of Cancer Treatment — Cancer Support Community

"Before making a decision about your treatment, it is helpful to know what the common short-term and long-term side effects are and how to manage them. Everyone experiences treatment and side effects differently, but it can help to feel prepared." Learn more through this printable guide.

>>  Obtaining Palliative Care to Improve Quality of Life During Treatment — Center to Advance Palliative Care

"This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.  It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment." Learn more through this printable Q&A handout.

Also: 

• "Palliative Care Vs. Hospice Care: What's the Difference" (Suzanne O'Brien, RN; 2023 Interview by A Cure in Sight; 45-minute video)
• "Palliative Care and Hospice Care in Ocular Melanoma — When to Call Who?"  (Palliative Care Physician Ted Dropcho; 2023 A Cure In Sight Conference; 55 minute video)
• "Considerations for Palliative Care and Hospice Care" (Jennifer Drew, LCSW; 2020 A Cure In Sight Conference; 50-minute video)

>>  Protecting Yourself Against Health Fraud Scams — U.S. Food and Drug Administration

"Health fraud scams refer to products that claim to prevent, treat, or cure diseases or other health conditions, but are not proven safe and effective for those uses." Page links go to safety alerts and recalls as well as to topics such as "tainted products marketed as dietary supplements" and info on "how to report problems." (Also available in Spanish.) 

​>>  Creating Advance Directives — National Hospice and Palliative Care Organization

NHPCO's CaringInfo.org website "provides free advance directives [Healthcare Surrogate and Living Will forms] and instructions for each state that can be opened as a PDF. [...] Every state allows you to choose someone to make decisions about your healthcare when you are not able to make decisions for yourself."

Also: "Advance Care Planning" (Bonnie Herrmann, LCSW; 2021 Ocular Melanoma Support Alliance meeting; 55-minute video)

​>>  Discussing Medical and End-of-Life Care Wishes — The Conversation Project

"The Conversation Project is a public engagement initiative of the Institute for Healthcare Improvement. Our goal is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected." All guides are available to download and print for free. Topics include "Your Conversation Starter Guide," "Your Guide to Choosing a Health Care Proxy," "Your Guide to Being a Health Care Proxy," "Your Guide for Talking with a Health Care Team," and "What Matters to Me Workbook." 

​>>  Finding or Keeping Your Job — CancerAndCareers.org 

"Cancer and Careers empowers and educates people with cancer to thrive in their workplace, by providing expert advice, interactive tools, and educational events." (Also available in Spanish.)

>>  Navigating Cancer Rights in Employment, Insurance, and Finances — Triage Cancer

"Free one-on-one help in the areas of health insurance, disability insurance, employment, finances, medical decision-making, estate planning, and more" through its Legal and Financial Navigation Program. And much more information can be found under the resources tab and materials tab, such as "Cancer Rights Guides," "State Laws" database, and "Cancer Finances" toolkit.

Also: "Navigating Health Insurance" (Joanna Morales, CEO of Triage Cancer; 2022 A Cure in Sight Conference; 35-minute video) and "Navigating Health and Disability Insurance" (Joanna Morales, CEO of Triage Cancer; 2021 A Cure in Sight Conference; 80-minute video)

>>  Resolving Cancer-Related Legal Issues — Cancer Legal Resource Center

"CLRC is the only national dedicated center for patients, survivors, caregivers, and health care professionals to access confidential cancer-related legal information and resources at no cost [...] on matters like maintaining employment through treatment, accessing healthcare and government benefits, taking medical leave, and estate planning."