Model Systems Knowledge Translation Center's Factsheet Production Process: Engaging Our Audience Step-by-Step
American Institutes for Research
Model Systems Knowledge Translation Center
Submitted by Cynthia Overton
This strategy highlights the development of Model Systems (MS) consumer factsheets. These informational products convey in plain language MS research and expert consensus to support people living with spinal cord injury (SCI), traumatic brain injury (TBI), and burn injury (burn).
The Model Systems Knowledge Translation Center (MSKTC) is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research to support the knowledge translation (KT) efforts of MS grantees who conduct research on SCI, TBI, and burn injury. MSKTC summarizes research, identifies health information needs, provides technical assistance, and develops and disseminates information resources. All resources developed through MSKTC are available online at http://www.msktc.org/ and may be used freely with proper attribution. Consumer factsheets form the bedrock of MSKTC resources. The process for developing MSKTC factsheets is described below.
Knowledge Translation Strategies
MSKTC collaborates with MS researchers to develop factsheets that communicate research findings about the treatment of and recovery from SCI, TBI, and burn injury. This multistep, structured process engages relevant stakeholders, such as individuals with SCI, TBI, and burn injuries and their caregivers. The factsheet development process includes six steps: (a) identifying factsheet topics, (b) developing content, (c) writing content in plain language, (d) consumer testing, (e) expert review and approval, and (f) dissemination and measuring use.
- Identifying Factsheet Topics
MSKTC and MS researchers consider many factors when identifying a factsheet topic. First, they consider findings from consumer needs studies conducted by MSKTC. These studies include surveys and interviews of consumers on topics about which they want to learn more information. Second, MS researchers consider needs expressed to them throughout their clinical practice. Finally, they consider the availability of MS researchers with expertise on the proposed topic. At least one author will come from an MS center. Researchers with expertise on a topic but who are external to the MS network are welcome to partner with MS researchers to develop factsheets.
- Developing Content
Once the topic is determined, the authors who are MS and non-MS researchers develop the content for the factsheet. MSKTC has developed a KT tool to help authors develop factsheets that consumers can read and use.
- Writing Factsheets that Patients Can Read and Use: http://www.msktc.org/lib/docs/KT_Toolkit/MSTKC_WritingGuidelines_508.pdf
- Writing Content in Plain Language
MSKTC translates into plain language the content produced by researchers. This is a critical step in the factsheet development process, because this step aims to clarify technical terms and phrases that may be difficult to understand among individuals outside of the research and medical communities. MSTKC has developed a KT tool on how to write and test plain language products.
- Writing and Testing Plain Language: http://www.msktc.org/lib/docs/KT_Toolkit/MSKTC_Plain_Lang_Tool_508.pdf
- Cognitive Testing
To ensure that factsheets resonate with consumers, MSKTC engages individuals with SCI, TBI, or burn injury (depending on the topic of the factsheet) and their family members to provide feedback on a draft version of the factsheet. Feedback is gathered through a series of cognitive laboratory interviews with consumers. MSKTC has developed a KT tool on how to test factsheets with consumers.
- Testing Factsheets With Consumers: http://www.msktc.org/lib/docs/KT_Toolkit/MSKTC_Cog_Testing_508.pdf
- Expert Review and Approval
Authors revise a factsheet to address consumer input. Once this process is complete, MS project directors review the factsheet. This process concludes with a vote for approval by authors.
- Dissemination and Measuring Use
MSKTC disseminates factsheets broadly throughout MSKTC and its partners’ networks. Dissemination outlets include MSKTC’s monthly newsletter, social media, electronic mailings to organizations that cater to the audience of the factsheet, and distribution at conferences.
To gather input on utilization, MSKTC works with an analytics specialist to identify periodically the number and source of downloads per factsheet. MSKTC also invites users to provide feedback by completing a short survey on its website. MSKTC staff use the survey results to refine the factsheet development process when appropriate.
To increase reach, MSKTC engages a certified translator to translate factsheets into Spanish. Despite limited financial resources, MSKTC invests in Spanish translation because it is the second most commonly spoken language in the United States, with more than 37 million native Spanish speakers. MSKTC uses monthly analytics data from its website to measure the reach of factsheets. From this data, MSKTC can identify the total number of times a collection of factsheets has been viewed by website visitors, the top 10 factsheets and numbers of views per month, and the top 10 factsheets by type of injury (SCI, TBI, and burn). Reports on reach can be shared during MS project directors meetings and as requested. MSTKC uses this information to guide the factsheet review and update process.
MSKTC experienced initial challenges in identifying consumers to participate in the user-testing component of the factsheet process. However, MSKTC attracted new participants by increasing its visibility and broadening its network. This involved distributing flyers at conferences, conducting targeted outreach to consumer groups and making specific requests for them to share recruitment information with their stakeholders, and posting social media messages about user-testing opportunities. In addition, the MS Knowledge Translation Committee and factsheet authors have contributed greatly to helping MSTKC recruit consumers to test factsheets.
Factsheets are available by type of injury:
- SCI: http://www.msktc.org/sci/factsheets
- TBI: http://www.msktc.org/tbi/factsheets
- Burn injury: http://www.msktc.org/burn/factsheets
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