Being a patient with a rare disease himself the benefit of patient advocates became clear to Adrian Gorecki. This convinced him to become a patient advocate himself. As such he is working with professional organizations now to help provide materials to patients in need and assist in both providing information and guidance on receiving the best care and help as a patient but also in working with other organizations to maintain and grow funding to expand the resources available to patients and those with debilitating deficiencies and diseases. Using his education in law and partnering with his wife, a trained psychologist, he has helped create the Healthcare Education Institute, to “create educational tools for patient organizations” and ensure these tools remain free for the patients and organizations that use them.
It is important to also take care of patient relations, and “provide trainings and also go online with those trainings” to adapt to the changes currently working in the world. It is important to be able to reach people everywhere who need it and while focused on the EU there are patient organizations everywhere who need the information and the supports, there is a need for patient advocacy everywhere.
The institute is focused on helping to maintain the focus on the patient, to help educate the patients as well as the healthcare professionals and industry representatives (regarding relations with patient advocacy groups). Due to the diverse needs of the different diseases and health issues there has become more focus on supporting organizations for specific diseases, to help fit their exact needs better and to keep those advocates focused on the needs of that group and that organization. There is education provided on how to obtain funding for these individual organizations as well as how to manage that funding, to keep volunteers motivated and involved, ways to set up the organizations and training on how to operate it. Encouraging others to do some of the work and to bring more people to volunteer their time helps to create advocacy groups for each need that can be effective. The education provides is “also the basics of project management; how to get funds from private and from taxations funds” as well as social media and how to run awareness campaigns both on social media and in person, it teaches how to advocate not only for a whole group but for an individual patient.
They also help to form relationships between the groups an across the countries, so they can share their own experiences and how they achieve change and help each other to move forward. This group can work with the groups and sometimes with the individual patient themselves, whichever is needed at the time and circumstance.
As healthcare and society change, the way that people advocate for patients is also changing. It has been changing with it to provide the needs for information, for training, for materials such as handbooks and videos, to help move patient advocacy forward and to keep up with the needs of society and to move advocacy towards online and social media as well as maintaining in person training and help.