Receiving a medical diagnosis can be a difficult and scary experience. You may even be left with more questions than answers. For many, Patient Advocacy Groups, or Patient Organizations, can help answer those questions. These groups, typically non-profit organizations, promote the needs and priorities of local patient communities and represent a wide variety of disease types and focus areas. They offer community, support, and key information at a time when patients need it most.
With years of experience partnering with healthcare providers, developing educational resources, counseling, and engaging with patients, caregivers and survivors, patient organizations hold a unique understanding of how to advocate for positive health outcomes. We’ve compiled a shortlist of expert tips from patient advocacy leaders all over the world who collaborate with Pfizer and champion the patient voice. Read on to learn how you can advocate for your own health or the health of someone you’re caring for, starting now.
1. Don’t hesitate to speak up
No matter how minor you think your medical situation is, tell someone about it immediately, according to Dr. Ruth Hecker, Chair of the Federal Association for Patient Safety, Germany.
“Don’t wait to seek help because you’re afraid to be a burden,” she says. By getting ahead of the situation, you just might save yourself and the people you love time and worry in the future.
2. Identify those who can help – and connect with them
While speaking up is the first step, knowing who, and how, to reach those who can support you is just as important. “They key to being your own best health advocate is knowing how to tell your story with passion and conviction,” said Michelle Colero, Executive Director of BladderCancerCanada. “Another important aspect of effective advocacy is knowing who to advocate to. It’s important to understand who can help address your issue, which can vary depending on your need or concern.”
3. Seek a team approach to your care
The ideal patient-doctor relationship is a team effort. “Your providers want you to tell them what is going on with your health so that they can provide you with the best and most informed care possible,” says Lydia A. Isaac, Vice President of Health Equity and Policy at the National Urban League. Plus, she adds, “the more information that you can get from your providers, the better informed you are to make the decision that is best for you.”
4. Don’t rush decision-making
You might feel like everything needs to be decided all at once, but wellness is a process and patience is key. “Consider illness not as an end point, but as a pause,” says Marlene Oliveira, President of Brazil’s Instituto Lado a Lado, which specializes in cancer and cardiovascular disease. “Patients and caregivers need to understand a diagnosis, discuss treatment options through to rehabilitation and moving forward.”
5. Caregivers need to practice self-care
If you’re a caregiver and feel physically or psychologically exhausted, seek support — if not for your own health, for the health of the loved one you’re caring for. Many patient groups and organizations offer resources and counseling specifically designed for patient families and caregivers. “Self-psychological care is so important,” says the CEO of the Alzheimer Spanish Federation, Jesús Rodrigo. “This can be a difficult time for both patients and their caregivers.”
6. Trust the science and keep the hope
Scientists around the world are developing breakthroughs and building cutting-edge technology, relentlessly pursuing treatments that save and extend lives. These advances have helped humanity overcome the toughest health challenges and will continue to change the course of medicine. According to Piga Fernandez, President of GIST Foundation Chile, a PAG that supports people with gastrointestinal cancer, it’s also important for both patients and caregivers to look forward to the future. “For those who have just been diagnosed: be hopeful. Have hope in the advances in science, have hope in all the research that is being conducted each day to find new diagnostic methods and personalized treatments, and have hope in community,” she says.
If you’d like to actively contribute to medical research and to help scientists find new ways to treat patients, consider participating in a clinical trial. And for additional support navigating your healthcare, ask your health care provider or search online to find a patient advocacy group. While a diagnosis may be scary, patient advocacy groups connect you to people with shared experiences and can give you the information and resources you need to make the right healthcare decisions for you.
