A Guide to Advocacy

Noun; public support for or recommendation of a particular cause or policy.

Synonyms; support for, argument for, arguing for, calling for, pushing for, pressing for; defence, espousal, espousing, approval, approving, endorsement, endorsing, recommendation, recommending, advising in favour, backing, supporting, favouring, promotion, promoting, championship, championing, sanctioning, acceptance;

Advocacy is a term used by patient groups all over the world who are working to raise awareness of a cause, often to influence those who develop legislation to implement positive changes that they believe will impact society in a positive way.

Retina International and its stakeholders advocate for the implementation of policies to promote research and development, the inclusion of the patient voice in all policies that affect them and to improve access to therapies that can improve their lives.

Advocacy comes in different forms, including self-advocacy, citizen advocacy and independent advocacy.

Advocacy is key to people with unmet medical needs and disabilities who wish to access a proper diagnosis and access to the medical expertise and interventions that will help them to better understand their condition and prognosis. Often this piece of ‘advocacy’ can be in engaging the local healthcare provider (HCP) and even your personal doctor.

People living with disabilities can often be in a situation where they are not getting access to their entitlements. In this case, a person may need to engage their medical professionals but also local counsellors to advocate for their needs. In this case a person can advocate locally for services that can help them in their day to day lives, but they can also work with peers to engage a specific community to work together at a local or national level to ensure that all those with the same needs for the same support or services can use their collective voice to increase the chances of success in achieving their goals.

Advocacy is also becoming much more effective at a super-national or global level to influence decision making that has a global impact. The advent of computer technology and communications platforms has made it much easier to work globally and this is a particular objective of our organization. Since Retina International was formed, we have witnessed huge strides made by the medical and scientific community in uncovering the genetic changes that can lead to degenerative vision loss. These efforts are beginning to bear fruit with the first ocular gene therapy approved and launched onto the market in 2017. However, this stellar progress would not have been possible without strong patient advocacy. Now that treatments are within reach for some conditions and on the horizon for others, patient advocacy needs to continue in order to ensure access to the appropriate testing and access to treatments for those who need them.

An empowered patient population that is well educated in the disease area as well as in systems of research and healthcare can result in effective patient advocates that can bring about change. Appropriate training ensures that patients have the confidence and knowledge required to bring their expertise to the table in discussions on health care, research and medicines development with scientists, clinicians, pharmaceutical companies and policymakers.

But how do you get started? What do you need to consider? Who do you talk to? And how do you make your voice heard? In the delivery of your own personal healthcare, in accessing rehabilitation services for your community, how do you access a genetic test, how do you advocate to enter an appropriate clinical trial and how do you ensure that you and others with the same needs access the emerging therapies that can have a positive impact on your life?

The first step in patient advocacy can be approaching relevant patient organisations in your area. Retina International’s member organisations are a great place to start http://www.retina-international.org/our-members.

Understanding the various systems involved in biomedical research and healthcare can seem daunting. However, there are helpful education tools available online. These include the European Patients’ Academy (EUPATI) that has a wealth of resources freely available and runs a patient education course online; EURORDIS, the ‘voice of rare disease patients in Europe’, provides training for patients, in person and freely available online, and acts as a link between trained patients and significant organisations, such as the EMA, where patient advocates can effect change in many areas. Some countries are now beginning to provide patient education courses that are specific to their own country’s systems. Examples of these include the 6-month long IPPOSI Patient Education Program in Ireland and the EUPATI UK Mini training day courses.

This section of our toolkit aims to help you to understand the areas that the Retina community is concerned with and how we can work to ensure the views of this community are considered in the development of policy that affects us today and in the future.

‘Nothing about us without us.’