Presentation 211 b linda lorentzen_ helping your constituents navigate life with als
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The ALS Association 2014 Clinical Conference Phoenix, AZ
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Presentation 211 b linda lorentzen_ helping your constituents navigate life with als
- 1. Helping Your Constituents Navigate Life with ALS: An On-Line Navigation Tool Linda Lorentzen, OTR/L Vice President, Care Services
- 2. UA-54E6xp9an1d453-1 Search • What should I expect with an ALS diagnosis? • What are all the things I need to know? • How do I prioritize? • I don’t know what I don’t know!
- 3. Navigate Life with ALS A quick preview…
- 4. A Note about Resource Links…
- 5. Our Process: 1. Outline 2. Buy-In 3. P.M. & Timeline 4. Beta Test 5. Launch!
- 6. Our Process 1. Outline
- 7. Our Process 2. Buy-In: IT CS Team
- 8. Our Process 3. Established Project Manager & Timeline
- 10. Our Process 4. Beta Test
- 11. Our Process 5. Launch!
- 12. Lets’ Take a Look!
- 14. Next Steps: Feedback • Google Analytics • Brief Survey
- 15. Next Steps: Promotion • Social Media • ALS Connections
- 21. Linda Lorentzen, OTR/L linda@alsmn.org or Jennifer Myhre, MSSW, LICSW jennifer@alsmn.org 1-888-672-0484
Editor's Notes
- Welcome/introduction…
- ALS is a disease that manifests differently for everyone. There are variables of onset, cause (genetic vs. sporadic), rate of progression, & muscles affected. Because of all of these differences, it’s tempting to think that there is no one way to guide people…that mapping out their specific journey with ALS is impossible. It likely is, but The ALS Association can be the go-to source for pathways to the best information available to people with ALS, their families, and health care team!! The CS staff at our Chapter have heard these questions/comments over the years (have you?)… In fact, it wasn’t until we observed a team member from one of our Certified ALS Centers making an attempt at a ‘roadmap’ themselves that we decided, “WAIT!? Who better to do this than us!?”
- You should all have a 3-page hard copy in front of you…(CLICK ON LINK TO VIEW) This tool, which we’ll look at more closely in a few moments, includes a sequence of categories & subcategories. And then within each sub-category, there may be multiple links. (I.e. Transportation: Driving Evaluation: State by State.)
- A note about resource links…we were intentional about staying away from going WILD with resource links. It’s tempting to put them all on there…everything we find that MIGHT be helpful to someone. However, we made a deliberate decision to primarily keep information to what we feel are top notch articles/information. We repeatedly asked the question, “what is the cream of the crop information related to this topic?” Why? 1) Information overload: Where to draw the line?? There’s an endless amount of information available on-line. And our CS staff would prefer to help our constituents by providing more tailored responses to their individual questions vs. giving them a seemingly infinite # of links to explore on their own. 2) Not to mention the fact that updating a wide-ranging resource list would be a part-time job. ***Because our territory spans 4 states, we did take care to break certain things down by state (the transportation example.) But our large territory also supports our decision to set some limits.
- VIEW LONG ENOUGH FOR AUDIENCE TO SEE THE LIST. READ THROUGH QUICKLY AND PROCEED TO INDIVIDUAL SLIDES TO FOLLOW…
- One of the first things we looked at was…”What are the things we generally talk to people about first?” This question gave us a place to start, and helped us to determine the sequence. So the tool begins with the most basic information…(as you can see on the handout) ALS Information, Diagnosis/Treatment, Symptoms… We grouped the information into categories. Each category broken down into sub-categories. This was our guide in creating an outline
- We knew that embarking on a project of this nature would require a commitment from more than just our team. Our IT “Dept”, aka Sharon, would need to be on board. Did she have the time and interest in a project of this nature, now and overtime? Fortunately for us, the answer was yes. The comprehensive and specialized nature of the information we envisioned with this project would require the collaboration of a multidisciplinary team. (In our case, we’re fortunate to be comprised of OT’s, a nurse, a chaplain, and a social worker.) The project would require each team member to contribute their time & expertise.
- We determined that this project would best be served by a single manager, whose role would be to fine-tune the categories, sub-categories, and the information contained within them. She would also assign team members to various topics and partner with them to finalize their portions before submitting to IT for inclusion.
- The project manager also determined a timeline that spanned a period of 10 months…from start to launching on our Website. (See screenshot with timeline/to-do list.) Things were broken down into specific tasks, who was assigned to those tasks, and due dates. The timeline kept a certain momentum, without overwhelming the team…including IT. • The data gathering stage took 4-5 months • Review, editing, beta testing, revisions taking the remainder of the time.
- And our beta test simply consisted of inviting board members and selected people with ALS to review and provide input. (This was over a period of 2 months.)
- The Navigation Tool went live on our Website May 1, 2013, in honor of ALS Awareness Month. Since then, we’ve made a few edits/additions, and we’ll plan to continue to do so as needed.
- (Review the navigation of on-line tool.) CLICK ON HYPERLINK TO ACCESS ON-LINE VERSON~ (participants will have color handout of PDF version.) The Navigation Tool lives on our Website. Highlighted under Care Services. (Navigate to Chapter website main page.) Allows you to navigate the 13 categories by clicking on arrows. There’s also the option to navigate through the PDF version, which contains more categories/sub-categories per pages, so easier to view. (This the version participants will have in front of them.) This appears as a separate window, so can be closed and user returns to Web version. Clicking on a sub-category will bring users to a new page with more specific links to information. To return to the previous page, the user can click on the red category button above. Comments/Questions: Link included on each page of the Web version.
- Where do we go from here? Our plan is to make continued improvements to the contents, as well as flow of information in this tool. In order to do this, we’ll need more feedback. We’ve received plenty of antidotal feedback from users about how much they like the concept and that it generally a useful tool. However, we don’t yet have a lot of specific feedback…either anecdotally, or via the portal on our website. -(see screenshot of feedback button on Website.) We’ll be spending time this next fiscal year looking at how to elicit this feedback.
- Meanwhile… WILL ADD INFO ABOUT GOOGLE ANALYTICS HERE. WILL ALSO ADD ANY FEEDBACK FROM EMAIL SURVEY OF MAYO LUNCH GROUP.
- So far, we’ve promoted the Navigation Tool via Social Media---Tweets & Facebook, as well as in ALS Connections. We continue to explore other ways to promote it. One thing we’ve recently been using are our new business cards…(NEXT SLIDE… screenshot of back of business cards.)
- This is now being printed on the back side of the business cards of the CS staff. It includes a description of our Navigation Tool, as well as a QR code that can bring people to our Website to view it.
- Finally, we realize that this endeavor will take time and effort to maintain. Are the hyperlinks in working order? Is all the information still accurate? Has there been feedback that requires updating or adding to the tool?
- We’re working on a maintenance plan that involves a rotating project manager q 6 months. The PM will work with staff to review and update their portions of the tool. (SEE NEXT 2 SLIDES FOR REMAINDER OF ASSIGNMENT CHART.)
- (See legend for assignments.)
- Are there questions? Does anyone have any immediate feedback? Is this something you feel would be useful for your Chapter/constituents? If you have any follow up questions or feedback, feel free to contact Jennifer Myhre, CS Coordinator at our Chapter!