A world of support: Patient advocacy groups, supporting you through your care journey

As a patient, loved one or care partner, patient advocacy groups are there to support you. They are organizations that help patients with a particular disease, disability, or condition. But how can you connect with a group, and what type of support can they really provide?

In this blog, you’ll learn:

• What patient advocacy groups are
• The benefits of connecting with a group
• How you can find a group that’s right for you
• The other important roles of patient advocacy groups, focusing on their involvement with clinical trials

What are patient advocacy groups?

Patient advocacy groups are created to pull together communities that understand the challenges and issues faced by people with specific conditions. They help improve health outcomes by providing a support network to patients, their loved ones, and care partners, help people navigate health systems and understand the medical language in simple terms. The groups you interact with may be small or large, but, regardless of size, they will seek to provide information about your condition and treatment options, perhaps provide support services such as a telephone helplines, and speak up for you when you don’t feel confident doing so.

The people who work at these groups may be patients themselves who have experience of living with your condition, or professionals who work very closely with patients and want to help make sure your voice is heard. Either way, as you get to know the individuals at an organization, you may well discover real-life insights from a patient’s and/or caregiver’s perspective and contacts who will be well placed to discuss your questions and worries.

Why should you connect with an advocacy group?

Patient advocacy groups do so much. In fact, many of them do much more than most people realize. Let’s take a closer look at what they do and how they benefit you as a patient or loved one.

Support and advice

Advocacy groups can be a listening ear at the end of the phone and provide practical tips for things like how to lessen side effects. For example, did you know that sucking on ice chips during chemotherapy treatment can minimize mouth soreness, making it easier to eat and drink afterward? Some of them even have 24/7 hour helplines so they can provide you with the support you need, when you need it.

Advocacy — making sure your voice is heard

If you find it hard to speak up, a patient advocacy group could be invaluable to you. An advocate will help you feel heard. It could be that they help challenge decisions about your healthcare if you do not agree with your doctor or nurse, and stand up for your rights. You can also ask your advocate questions if you’re unsure of anything your doctor or nurse has told you.

Community support and health equity

No matter your age, gender, race, sexual orientation, disability status, where you live, or wealth, you should never be at a disadvantage when it comes to healthcare. Many patient advocacy groups provide local support. This is so they can provide support within your community to try and help you navigate through difficult or challenging issues.

This is reflective of the goals of many advocacy groups to try and help everyone, no matter who they are and where they’re from. Advocacy groups are only one small piece of the puzzle when it comes to health equity, but, if you face any social inequities, such as racism, classism, ableism etc., get in touch with a group to see if they can help or advise you.

Access to healthcare

If you’re uninsured or underinsured, it can be very difficult to access the care you need. Most patient advocacy groups are actively working to help everyone access relevant treatments. Some groups provide excellent advice about how to select the best insurance plan for you. They can also refer you to organizations that may help to pay for your healthcare bills or provide some medical services for free if insurance isn’t an option.

Encouraging prevention and early detection

Disease and condition specific patient advocacy groups often have great resources for early detection, and where appropriate prevention. So, if your doctor has warned you that you’re at risk of type 2 diabetes, a relevant group may have some useful tips for lifestyle changes that could decrease your chances of developing the condition. Likewise, groups that specialize in conditions like breast cancer may also provide great guidance on early symptoms to help you get diagnosed at the earliest and most treatable stages of a disease.

Shaping the future

Some advocacy groups work with pharmaceutical companies to help their scientists better understand your condition. This can enable pharma companies to develop more effective therapeutics. Not only that, but by keeping up-to-date with the latest information, a patient advocacy group can hear about the latest and most promising clinical trials. They may even be able to connect you and your doctor with a relevant clinical trial that could provide a treatment option for you.

This sounds great but how can I find an advocacy group?

Ask your doctor, nurse, or pharmacist about patient advocacy groups. You can also find local and disease-specific groups by searching online. 

All of us are better when we work together

When it comes down to it, patient advocacy groups and pharmaceutical companies have the same goal: they want to improve the health outcomes of people around the world. That’s why more and more groups are connecting with Labcorp, which works with many pharmaceutical companies on clinical trials, to learn more about upcoming and ongoing clinical trials. This is fantastic news as patient advocacy groups can help you find out about the trials that are relevant to you and can provide information on how participating in a clinical trial can form part of your treatment pathway. They can also review trial information with you in a way that’s easy to understand.

But that’s not all. By participating in a clinical trial and connecting with a patient advocacy group, you will have the opportunity to help shape the treatments that could be available to you and other patients in the future.