Article type
Year
Abstract
Background: There is a growing need to provide information to patients that goes beyond simple commentaries. Patients want to understand how the results of high quality research applies to them to better understand what they should be discussing with their own doctor about their care. One of the proposed ways to strengthen the connection between expert physicians/researchers and the general public is to involve people who have the disease and are willing to contribute to both research and education as Patient Partners.
Objectives: Describe the collaboration between Patient Partners and a Canadian group of thrombosis experts (CanVECTOR) on translating evidence from research studies/reviews into summaries that are easily understood by the general public.
Methods: Research articles to be translated for the public are selected from two different pools – (1) recent critically appraised articles highly rated by jury members including Patient Partners or (2) “best evidence to date” articles that answer questions raised by Patient Partners. Summary writers are primarily Thrombosis residents or Clinical Fellows who are mentored by an expert Thrombosis Consultant. Summaries are written online using an electronic platform that allows for collaboration between mentee, mentor, editor and copy editor. The format of the summary, designed with input from Patient Partners, is structured to be easy to read with minimal extraneous detail. Results are presented in two different ways for the lay audience - numerically within a Table and in simple language text (Figure 1). The final draft of the summary is reviewed by Patient Partners who may make additional suggestions to improve clarity.
Results: From May 2018 to present, 18 Patient Evidence Summaries have been published on the CLOT+ website. The top summary has been viewed over 21,000 times. Posters and a workshop based on the process of writing the summaries have been presented at a national conference. Several key thrombosis education groups show feeds linking to the evidence summaries on their websites.
This process for writing patient evidence summaries has resulted in lessons learned around three key principles: (1) Context - Patient Partners appreciate the “What’s the Issue?” section because it helps to show where the research fits within what is known (or not known) about the topic. This requires input from content experts. (2) Clarity – connections linking concepts together that are well understood by experts can be confusing for lay people. This requires careful attention to definitions, and a detailed review by Patient Partners. (3) Applicability – it is important for a Patient Partner to know if the data presented is directly relevant to them as an individual. This is the key to knowledge translation.
Conclusions: Translating high quality research evidence into lay summaries only works if there is respectful collaboration between content experts and Patient Partners.
Patient or healthcare consumer involvement: Patient Partners were involved in all aspects
Objectives: Describe the collaboration between Patient Partners and a Canadian group of thrombosis experts (CanVECTOR) on translating evidence from research studies/reviews into summaries that are easily understood by the general public.
Methods: Research articles to be translated for the public are selected from two different pools – (1) recent critically appraised articles highly rated by jury members including Patient Partners or (2) “best evidence to date” articles that answer questions raised by Patient Partners. Summary writers are primarily Thrombosis residents or Clinical Fellows who are mentored by an expert Thrombosis Consultant. Summaries are written online using an electronic platform that allows for collaboration between mentee, mentor, editor and copy editor. The format of the summary, designed with input from Patient Partners, is structured to be easy to read with minimal extraneous detail. Results are presented in two different ways for the lay audience - numerically within a Table and in simple language text (Figure 1). The final draft of the summary is reviewed by Patient Partners who may make additional suggestions to improve clarity.
Results: From May 2018 to present, 18 Patient Evidence Summaries have been published on the CLOT+ website. The top summary has been viewed over 21,000 times. Posters and a workshop based on the process of writing the summaries have been presented at a national conference. Several key thrombosis education groups show feeds linking to the evidence summaries on their websites.
This process for writing patient evidence summaries has resulted in lessons learned around three key principles: (1) Context - Patient Partners appreciate the “What’s the Issue?” section because it helps to show where the research fits within what is known (or not known) about the topic. This requires input from content experts. (2) Clarity – connections linking concepts together that are well understood by experts can be confusing for lay people. This requires careful attention to definitions, and a detailed review by Patient Partners. (3) Applicability – it is important for a Patient Partner to know if the data presented is directly relevant to them as an individual. This is the key to knowledge translation.
Conclusions: Translating high quality research evidence into lay summaries only works if there is respectful collaboration between content experts and Patient Partners.
Patient or healthcare consumer involvement: Patient Partners were involved in all aspects