Newsletter - POR champions that inspire and promote a patient engagement culture.In our

[Samira Chandani]

The communications team is looking to include inspiring stories on positive patient engagement, that can be included in every newsletter

Have you been involved in Patient Oriented Research? If you had a positive experience - please share your inspiring story here. We know lots of you have had amazing experiences.

[Annette McKinnon]

In my first experience of patient oriented research I actually thought I was only "helping out" and was happy to know a lot about the topic and contribute what I knew.

An arthritis researcher contacted me and asked of I could host a Tweetchat for her. It was a stretch at the time, but I had co-hosted a tweetchat in the past and it seemed do-able. There were numerous meetings held by phone, and I publicized the chat, registered the event, invited friends and Twitter acquaintances, and kept the conversation going as people watched the live event by webinar.

I thought the event was the end of the process, but it became a research paper and I was credited as a co-author.

Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event

So that was my introduction to POR

Annette

[JoAnne Mosel]

A review I did early on was on a plain language summary on Copy Number Variation . Since my son has a CNV, I had an inkling about it. I was thrilled when the research coordinator sent me this :"This is incredibly helpful. Your re-write actually addresses most of the critical feedback we had from our second parent reviewer, so you have made our jobs much easier." She also said the scientist/author was very pleased with how I re-worked the document.

[Virginia McIntyre]

I am the patient representative with a research team regarding healthcare workplace injuries and barriers for safe handling practices and changing culture, Workplace injuries are not only about the person who gets injured but how management handle these. I am happy with the way this research is heading, even tough we are only in the early stages. Having the patient perspective a the table has helped guide the direction of the research, also by being present this has made me aware there are people in positions of influence who care and like to see changes.

Workplace injury has changed my life and left me living with a chronic illness, happy to see this as part of the research they are presently looking into.

Virginia