4. PATIENT EVALUATIONS
Goals
• Obtain more useful feedback from patient evaluations at
2-year reviews
• Tailor patient evaluation to program needs
• Reduce costs
Approach
• Survey content development staff
• Identify menu of patient evaluation options
• Pilot options in coming year
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5. PATIENT EVALUATIONS
Pilot approach #1
• Patient independent review of booklet / in-house focus group
Pilot approach #2
• In-house patient cognitive interviews
Pilot approach #3
• Review of quantitative/qualitative demonstration site data
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7. UPDATING EVIDENCE DOCUMENTS
Goals
• Develop consistent approach to updating evidence documents
• Annotate existing content with supporting citations and
documents
• Easily share documents with Medical Editors
Approach
• Add citations to Crossroads documents , build EndNote libraries
• Update citations/EndNote libraries as needed at 6-month and
2-year reviews
• Test document sharing with Medical Editors 7
9. DATA DISPLAYS IN DECISION AIDS
Goals
• Develop evidence-based guidelines for using data displays to
communicate risks and benefits in our patient decision aids
• Create process for keeping guidelines up to date
Approach
• Inventory our decision aids: Data displays currently used
• Review patient feedback from 2-year focus groups, cognitive interviews
• Conduct literature review on data displays for risk communication
• Focus on review papers; set up PubMed searches
• Synthesize findings by topic
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10. DATA DISPLAYS IN DECISION AIDS
Literature review: Questions to address
• Pros and cons of different visual formats?
• Are some displays better than others for certain types of
information? (pictographs, pie charts, bar graphs, line charts,
use of icons)
• How do literacy and numeracy skills affect the way people
understand the presentation of risk?
• What is the best way to show the chance of an outcome over
time?
• Do some types of displays bias a person’s decision?
• Are there any formats for data display that show promise
that we do NOT use in our programs? 10
11. DATA DISPLAYS IN DECISION AIDS
Draft guidelines have been developed
• General design
• Text
• Use of Color
• Best type of data display for specific information
• Further internal/external review needed (process TBD)
Plan for keeping guidelines up to date
• Run annual PubMed searches for new reviews on
“Data Displays” and “Data Communication”
• Review internally/externally (process TBD)
• Update guidelines as needed
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13. PROCEDURES WIKI
Goals
• Document all procedures to ensure consistency and to assist
new members of team
• Create a procedures manual that can be easily updated
Approach
• Chad Parmet designed Wiki, keeps it updated with
input from team
• Includes interim and 2-year reviews, new
content, CCG, general information and more
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Traditionally, we conduct patient focus groups who watch DVD only; no input on bookletFGs provide reality checks; is anything missing or out of sync? Do patients understand key messages? FG feedback is most helpful when it reinforces issues raised by clinical reviewers (usually comes up with missing info on drugs, procedures, etc)- Often we receive feedback on issues we can’t easily change – related to how patients/providers look or production values
#1: CHP, DCIS, SLP, ALBP, HDCVariation on this theme: independent review of booklet only (no fg): DIA, KAR-TMAllows us to get feedback on booklet changes made during last update. In-house FG allows us to follow upon questionnaires and also get feedback on DVDs (shown during FG)#2: KOA, HIP, WLS, KAR-EOAAllows us to get more specific feedback on changes made – to direct patients to specific sections in text#3: BPH, MCSIFor BPH, we have extensive amount of demo site data to leverage. For all of our reviews, we always look at demo site data. Depending on how much a program is used at our sites, we may or may not have data.For MCSI, not much to gain via FGs. Clinical input more important here. Per Cathy, I do not think we will get anything but positive feedback on DVD or booklet. The booklet is a comprehensive but very general overview of end-of-life care and options. There is no data and no chance of bias. The booklet is largely a resource for prompting people to think about what you want, when you want it, and how to do advanced directives and related documents. No patient eval (no demo site data either): BCMEach patient needs different information based on their situation, so patient feedback would likely to diverse and difficult to address. Also difficult to recruit people.
Consistent approach makes it easier: To update documents To respond to questions that arise about content- Willallow us to trace data in the programs directly back to its source. -The Endnote libraries attached to the citations consist of PDF docs and other sources, notesfrom the RA, framing decisions, Excel files with calculations,etc.Will happen over time. Can’t annotate all evidence docs at onceThe next step is determining the best way to share our Endnote libraries with the Medical Editors – for example, we've been considering Dropbox for this. Have been piloting this with some MEs:-Would send annotated document via email-Upload Endnote libraries (with PDFs, etc) to Dropbox-Open annotated document AND Dropbox Endnote library at same time. -Can then press a few buttons within Endnote to go directly to the PDF or other file attachments-Depends on ME preference. Some don’t want to use Endnote or don’t want to see the full docs, etc.*Can basically upload any files and attach to citations in Endnote library
GOALSCommunicating risks and benefits of treatment options is challengingMany peoplehave limited health literacy and numeracyskills, so information and data must be presented in a way that is easy to understand. There has been a lot of research published on this topic Too many papers to keep up with -Foundation has funded several grants for studying numeracy and literacy (our lit review did not include these)Wanted to develop a way to keep up to date on literature in this area. And wanted to develop guidelines, or “Best practices” for using data displays as we develop new programs/update existing programsAPPROACH – Literature Review - Wide body of literature, limited time, so focused on high-level review papers (not on individual studies)But there are not a lot of high-level papers, (so our guidelines might be based on expert opinion or small numbers of trials)Also consulted the McGee and Evers Toolkit for Making Written Material Clear and Effective (published by CMS, Centers for Medicare & Medicaid Services)Also consulted the FDA Guide to Communicating Risks and BenefitsWe also researched review papers on “risk communication” in general-FG patient feedback: Looking to see how patients responded to questions related to knowledge conveyed viagraphs or chartsCognitive interviews: Looking for specific feedback on issues related to understanding graphs or charts
There are many questions we could ask in a literature review – these are only some of themWe did not attempt to answer all of these questions initially.
Plan going forward to keep data display/risk communication evidence doc up to date:- Once a year, run two existing PubMed searches for new review articles. There aren't many. The team may also forward other articles over the year.- Review the new papers for any impact on two existing summaries: Data Displays and Data Communication.- Propose revisions to these 1-pagers as necessary.- review by CD team and others.Estimated time: 2 days a year
To increase our efficiency – we have complex processesEnsure consistency in how we work with Medical Editors and Health DialogTremendous help for new employeesTeam provides input