Strategic Clinical Networks Patient Members

Transcription

1 Name Role SCN Bio I got involved in my network by virtue of my role as the Chair for the Provincial Health Advisory Council for Addictions & Mental Geoff PAC Addictions & Mental Health. I hope to increase awareness that these issues are real and often hidden because people have given up on finding representative Health solutions. There needs to be awareness of what services are available. We just need to find ways to bring people who need the services together with those who provide the service. Kaj PAC representative Addictions & Mental Health I am a person living with Bipolar Disorder. I truly believe in patient centered healthcare where we are all one. One collective voice that says a healthy life is also about mental health and wellness. We all deserve to share our experiences as patients to live with compassion and empathy in a province that cares. Jean Bone & Joint I enrolled in the Patient Engagement Research Program. My focus was on osteoarthritis (OA) because I just began experiencing OA symptoms. Once I got involved in the SCN Core Committee I became hooked! They were going in the right direction! My 2 year involvement with the Cancer Provincial Advisory Council (PAC) brought me to the Cancer Network. I have all kinds of Tricia PAC representative Cancer experiences with relapses, complications, ICU and everything in between. I have something to offer back to people. It isn t always about making breakthroughs in treatment. Providing information that reduces uncertainty for a cancer patient s journey would be a huge improvement in the pain and suffering that patients and families go through. Eleven years ago I had a heart attack. Diagnosis, treatment and recovery went well, thanks to many dedicated health care Bob Patient Advisor professionals. About eight months later I resumed flying as a pilot. Given an opportunity to contribute to making improvements in health care as a patient advisor, I was pleased to join the Cardiovascular and Strategic Clinical Network. 1

2 My involvement actually started with a chiropractor taking x-rays and determining that I had osteoarthritis (OA) in my neck and Colin back I came to the Network through Patient Engagement Research (PER), where my group was researching waiting for help with the condition of OA. My passion it to work on opening up the doors so that patients can find equity in voicing their feelings/concerns and even positive experiences with the medical profession thus making future medical interventions more effective. I was part of the pilot Patient Engagement Researcher (PER) group, which I joined as part of my professional development. Rooh- Afza Patients have the knowledge; doctors just need to deliver information in a way that is easily understood. PER has opened my eyes and is helping me be a better person; not just as a doctor, but an overall better person that understands where the patient is coming from. My involvement with AHS started 24 years ago at Calgary General Hospital, where I went into a full cardiac arrest in ER, a good fortune for me & my family. Post event at some point I among many at that time were strongly encouraged to listen to our Winnie bodies and to start taking charge of it. I started doing that and more. I was invited to participate in this January For more than 30 years now I have always been an advocate for myself or others, and always solving or researching something, including health issues. I am now hooked on this process and look forward to the future working with the Cardiovascular and SCN. Lia Parent Advisor Critical Care Having a medically fragile child in 2011 forever changed my life. My eyes were truly opened for the first time about life (and lives) in the world of NICUs, PICUs and Alberta Children s Hospital. When I was introduced to the idea of the Networks, I was excited to be a voice, one for many, to help shape and conduct change in our Province. My hope is to assist in the guidance of change in Patient and Family Centred Care in our ICUs. 2

3 Pete Family Advisor Critical Care Corinne Patient Advisor Diabetes, Obesity and Nutrition Irene Patient and Diabetes, Obesity Family Advisor and Nutrition My involvement with Alberta s healthcare system revolves around my wife s (Barb) health journey which resulted in her dying in Foothills Medical Centre s Intensive Care Unit on October 25, I became a Family Advisor with my Network in February I am inspired to help others by sharing Barb's Story and encouraging the use of the collective voice of patients and their families. I am also inspired by the increased focus on Patient and Family Centered Care within healthcare, and specifically critical care. For me, overcoming obesity has motivated me to speak up and advocate for those who are still fighting the battle. I really want to help others and reduce weight stigma so I started looking for avenues to do that and reached out to the ODN SCN to become a patient advisor. During my journey of losing 110lbs over 1 year, I have had many experiences I feel are helping guide the work of the SCN and might better help Albertans in their weight management journey. I think I can really help with the language we use. Not just what we say, but what we don t say. We don t want to be blaming but we want to ask people for permission to talk about weight and help plant seeds. I am a mother of four and moved to Canada from the Philippines 20 years ago after my first child. I had worked in the Philippines as a registered nurse. I was diagnosed with gestational diabetes with all three of my following pregnancies in Canada. Having joined the ODN SCN when it launched in June 2012, I bring both my personal experience as well as a cultural perspective to the work of the SCN. As an employee with the Multicultural Health Brokers Cooperative in Edmonton, I help to bridge the gap between the health system in Alberta and newcomers to our country. For me, connecting obesity and diabetes to nutrition is vitally important within cultural populations. The real challenge is food. We eat a lot of different things and ethnic food isn t on the Canadian Food Guide. 3

4 I have struggled with chronic health issues for 20 years. As a result, I have had numerous interactions with our healthcare Marilyn Patient and Family Advisor Diabetes, Obesity and Nutrition system and have come to know on a deeply personal level it s strengths, limitations and weaknesses, systematically and interpersonally. Five years ago, my son was unexpectedly diagnosed with Type 1 Diabetes... I have seen that it is possible for healthcare to be provided in an atmosphere of compassion. I hope that I am a reminder to my SCN that healthcare is personal, must be personal, to be healthcare. Rashika Diabetes, Obesity and Nutrition I joined because of Patient Engagement Research. My family and those in my community all suffer from diabetes and lack an understanding of the disease. My Network can help me bring information to them. I am passionate about being an active member of my community and role model to those in my community by setting an example of how to do things. Natalia Pan Network I have patient care experience in Kyrgyzstan and Canada. As a new immigrant I see challenges to get quality of care. Working and being an intern in - Patient and Community Engagement Research, I witness positive examples of patients input to improve healthcare system and I am passionate about it. Ryan Patient Advisor Path-to-Care and E- Referral (Cancer Care, Bone & Joint, Surgery) I became a patient advisor after I severely broke my neck. It was a miracle I survived and was not paralyzed. I decided to commit to advocating for better safety and quality standards and to improve experience. Albertans need the opportunity to have their voice heard and to get involved with designing, planning and improving the services they use, or one day will need to use. Jennifer Patient Advisor Respiratory Jennifer is a patient advisor for the Respiratory Health SCN. She has been volunteering with Alberta Health Services for the past four years through various committees, giving talks and advising how to improve patient and family centred care. 4

5 Rick Patient Advisor Seniors Health Sylvia Seniors Health Tracy Family Advisor Seniors Health Les Patient Advisor Surgery Susan Pan Network A former co-caregiver for his aging parents, Rick is pleased to belong to the Seniors Health Community of Practice. A strong advocate for self-care for caregivers, Rick used writing to help cope and has shared his story, insights and knowledge in his first book, Caregiver s Guide for Canadians a valuable resource for prospective, new and current caregivers. I am a senior who has osteoarthritis and had a recent knee replacement. Healthcare and its operations are of keen interest to me. I am passionate about a caring society and feel that seniors deserve to be served by a system that is respectful, helpful and accessible as well as caring. Taking the Patient Engagement Research course offered me the opportunity to serve on the Seniors Health SCN and I am pleased to have a voice within the system. As my aunt s legal guardian/trustee, I was introduced to the Seniors Health Strategic Clinical Network through my involvement in a pilot project at the long term care facility, in which my aunt resides, was undertaking. For me, having the opportunity to be a voice for seniors a population often silenced, overlooked and/or ignored is a privilege indeed. My daughter works for AHS and every time we got together, I would always tell her to do this, do that. Finally she mentioned the Networks the perfect place to get involved and share my ideas. I want people to understand what is happening north of Edmonton. We have people up here that are 8 hours away from anything. It could take hours to get to a hospital. People do not realize the plight those living up north have to face to get to a hospital with proper equipment and staff. I have been a urology patient most of my life, first as a child having surgeries to correct birth defects and remove kidney stones then as an adult dealing with bladder cancer. These experiences made me realize it is a health area that is under-represented by patient voice. Many people don t want to talk about these problems because it is a below the belt issue. I learned about the Patient and Community Engagement Researcher () program from Wellspring Calgary and realized that through this I could give back and help others. 5

6 Natalie Family Advisor Emergency Over the last ten years I have had personal family health-related experiences pertaining to the emergency department, mental health and addiction services through AHS. I believe these experiences are relevant to this SCN and AHS priorities. I appreciate the opportunity to serve as a volunteer and more importantly, improve patient and family health experiences. Additionally, I have over eighteen years of practical experience in business and community engagement, leadership training and development, strategic planning, market research, local and regional economic development plans and managing of high performance teams. 6