Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates work for the institutions that are directly responsible for the patient’s care.
Typical advocacy activities are the following: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on healthcare-related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organizations of health-care professionals, the educational world, and the medical and pharmaceutical research communities.
What I Do….
Arthritis Research Canada -Arthritis Patient Advisory Board – APAB (2018 – Present) The Arthritis Patient Advisory Board (APAB), formerly known as the Consumer Advisory Board (CAB), is comprised of volunteer advocates with arthritis who bring personal experience and arthritis knowledge to research decision making at Arthritis Research Canada. Their goal is to ensure the patient perspective is represented on research matters related to prevention, treatment and self-management of arthritis. Individually and collectively, they communicate research information and findings to arthritis patients, professional organizations and the general public.
Canadian Institute of Health Research – Institute of Musculoskeletal Health and Arthritis – Patient Engagement Research Ambassador – CIHR-IMHA-PERA (2020 – Present) The Patient Engagement Research Ambassador (PERA) team is an evolution of IMHA’s Research Ambassador group, started in 2003. This group consisted of members of the public who either lived with a condition that falls under CIHR – IMHA’s research mandate or who were advocates for individuals living with those conditions, such as family or community members. The Research Ambassadors met twice a year to share information with the Institute and to take information away to share with their respective organizations and communities. The current PERA members will meet 2–3 times per year, providing bidirectional insights and perspectives from their own lived experiences and those from their communities to help IMHA achieve its goals and priorities.
Doctors of BC Shared Care Chronic Pain Advisory Committee (2020 – Present) Shared Care Chronic Pain network aims to improve care for patients with chronic pain, and to support communities in the spread of successful work across BC.
We are working with partners such as the Ministry of Health and Pain BC, to better coordinate initiatives to address chronic pain across the province.
Ambassador – The Arthritis Society (2017 – Present) Volunteering at the Arthritis Society is an opportunity to share your time, skills, ideas and have a positive impact on those affected by arthritis.
A Special Events & Fundraising role is a great opportunity to help the Arthritis Society raise vital funds to support our research, advocacy and solutions initiatives. These volunteers contribute in crucial ways by helping with the organization and leadership of local and national events and other fundraising initiatives and are often at the very frontline of our work with people affected by arthritis
Advocacy volunteers are the voice for those living with arthritis across the country and help us to create awareness at a local and national level. Volunteers do this by promoting new initiatives from the Arthritis Society in their communities and letting us know what needs to be addressed.
A leadership volunteer role is an opportunity to support the Arthritis Society at a more strategic level, and often involves taking on some responsibility for a defined area of activity or leading a group of your fellow volunteers. Our leadership volunteers operate in all areas of our work, and contribute their professional skills, experience, knowledge, and networks to help us achieve more as an organization
Writer – Creaky Joints (2019 – Present) CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research.
Rheumatoid Arthritis Ambassador – Healthline (2017 – Present) Healthline covers all facets of physical and mental health openly and objectively because we’re here for the whole person — for your whole life. And because people come to us with unique challenges we listen closely and put empathy first across our organization. In everything from our personal perspectives to our commitment to inclusivity, you’ll see that we feel with you.