PARS is designed to benefit participating boxers, their coaches, the program managers, and research analysts.   Developing a system with this many stakeholders in mind was challenging. 

First, it is not a gym management package.  It does not track attendance, billing, etc.  Here are PARS top 10 features:

1. Boxer Directory sorted by first name (coaches and volunteers don't know most of the boxer's last names) with a picture to distinguish between Bob Smith, Bob Jones and Bob Thompson.
    
2. Boxer Assessment Report including general info and up to 3 side-by-side assessment comparisons.  A Trend column whether the boxer is improving or declining... line by line.  And the boxer  receives a copy or the assessment report by email to share with family or even their neurologist!
    
3. Assessment scripts taking the coach and boxer through the assessment step-by-step.  Scripts include a full intake assessment from "What's your name?" to "Welcome !" or a scheduled reassessment.  Have a boxer with historical paper-based intake and assessments?  No problem.  PARS provides a quick and easy way to capture historical information and assessments.
     
4. Parkinson's symptoms, medications and general health/heart sections use checkboxes to quickly capture common information.  The boxer can't remember or pronounce medications and you can't spell them?  Now, just check it.
      
5. The easy-to-understand-and-explain 100-point scoring system.  The PDQ is scored "Never" to "Always".  The FAB is scored 0-4 with a 40 point max.  The TUG is in seconds and the S2S counts repetitions against a gender/age matrix.  PARS normalizes the scoring for the PDQ, FAB, TUG & S2S on a 100-point scale that everyone understands. 
      
6. When done with an assessment, immediately email a .pdf Boxer Assessment Report to the Boxer and your coaches.  The Boxer can share it with their family or even their neurologist.  Watch neurologist referrals go way up!
     
7. If a Boxer leaves the program permanently or to snowbird or for injury or illness, change their status.  If they return, reactivate them and all their records are restored.  Consider a Boxer in Tacoma, WA who is heading to Phoenix for the winter and returning in the spring.  You can transfer his/her records to the Phoenix gym and transfer them back in the spring.  The Boxer can do their January reassessment in Phoenix and their July reassessment in Tacoma using the same scripts and scoring system!
       
8. Coaches can hold more effective consultations with the Boxer and their family.  Detailed information gives them an instant overview of the Boxer's history and current capabilities and limitations.  Any time, anywhere.  Just tap on their picture!
       
9. Never miss another assessment or birthday.  App reminders for reassessments, birthdays, anniversaries and more.
       
10. Boxers with Parkinson's Project research.  You and your Boxers will be part of a national research project studying the impact of exercise as therapy for Parkinson's.  Boxer names and personal information are not viewable and Boxers can opt out at any time.  

PARS works because there is so much value for the individual Boxers in their Boxer Assessment Report, their PARS BAR!  The BAR shows the Boxer how they are doing in an easy-to-follow format they can share with their family and even their neurologist.  The boxer's excitement for PARS is built on the coach/boxer consultations and information in the BAR that encourages them to work harder and to stay with the program.  They are competing against Mr. Parkinson's and they now have a scorecard.

The top portion of the BAR is general Information such as age, birthday, when they joined and their next scheduled assessment date plus a headshot and standing posture profile photo.  There is a Boxer-at-a-Glance section so coaches can get a picture of the boxer in 15 seconds. 

The BAR includes detailed assessment information including:

• The PDQ-39, the FAB, TUG and S2S.  It also includes a new interactive Parkinson’s exercise planning tool.  If an program didn't use the PDQ, no problem.
   
• The BAR always shows intake assessment results as their baseline plus the most recent two assessments with a Trend column to see line-by-line how the boxer is doing.  Green means improving, red means losing ground.
   
• Easy-to-understand results using a normalized 100-point scoring system.  Easy to understand and explain scores allowing a complete picture of personal quality of life along with how they test physically.
   
• Includes historical assessments.  Depending on what information is available, PARS goes back to the beginning.  Boxers might have an intake assessment plus 2 or 3 or more reassessments.  PARS tracks their scores, line by line for each assessment.  PDQ, FAB, TUG & S2S.  Didn’t use the PDQ?  No problem. 
    
• The Boxer Assessment Report, on the tablet or printed, is a great tool for coaches to council the Boxer identifying places where they are improving and areas of concern.  A great way to keep Boxers involved and challenged to attend regularily, work hard, and improve.
    
• PARS reminds everyone when their next assessment is due.
    
• Their BAR can be shared with family or their neurologist in .pdf form by email. 

Our Boxers love having detailed progress reports for themselves and to share with family members and even their neurologist.  The Boxer Assessment Report, the BAR, has more information than any other source they currently have about how they are doing in their fight against Mr. Parkinson's.  They seen how Parkinson's impacts their quality of life and how they are doing physically.  The detailed comparisons to previous assessments are invaluable.

I used to tell prospective Boxers about John, Susie and David, my obvious success stories.  In the name of full disclosure, I should also talk about Tom, Nancy and Paul who are struggling because at some point MR. Parkinson's is a formidable foe.  And it turns out, those in the middle without obvious improvements or declines... well, I really didn't know.  Now I do.

Knowing they will be assessed regularly encourages them to work harder in each work out.  It is a strong motivator.   They are fighting against Mr. Parkinson's competing with just themselves.

And, they know that if they leave boxing, they lose the exercise therapy, the incredible coaches and the reports on how they are doing.

Our Boxers with Parkinson's love that they are helping other Boxers with Parkinson's through the research Project.  They can make a difference in someone else's life as the research project develops reliable and statistically grounded answers to questions about boxing as exercise therapy for Parkinson's in the largest, ongoing study ever conducted. 

In the normal Rock Steady assessment environment, when the Boxer fills out the paper version of the PDQ-39, coaches wonder what it all means.  They see 3 pages of "X"s but can't reach meaningful conclusions or provide guidance for the Boxer.  Most coaches don't know the questions are in 8 categories.  Even if they knew, the way the questions run together on the paper form doesn't make it easy to glean any great wisdom or pick up on any patterns from the last time the Boxer took the PDQ.  Many coaches just take the PDQ and put it in the manila folder.  It was anti-climatic for me and the Boxer.  Many coaches don't even use the PDQ.

The paper version of the physical tests was slightly better.  You have the 3-page FAB plus the TUG page and the S2S page.  Coaches can see how the Boxer did on each test but doesn't remember how they did last time.  Are they improving?  Are they losing ground? 

And scoring is so different there is no relative value between the tests.  The PDQ doesn't have a score, the FAB has a 40-point score and TUG is in seconds and S2S is repetitions against a male/female age driven chart.  The new Boxer Assessment Report shows all 12 tests on 1 page using a consistent 100-point scoring system and includes previous assessment results!

Now a coach can provide instant feedback and guidance to the Boxer and their family members, if present.  The coach can see a clear picture on a test by test basis where the Boxer is improving, staying the same, or losing ground.  The coach can discuss ways for the Boxer to focus on weaknesses and can even adapt their work out plans to support the Boxer.  They can suggest things the Boxer can do at home.

The coach can email the BAR to the Boxer, to family members or even their neurologist.  

When you join Boxers with Parkinson's your Sweat It Forward grant includes a new 10 inch Android tablet and entry of all your Boxers from the paper forms.  Up to 60 Boxers per location.  To do this, you just send your paper files to BwP.  There are special tools to make the entry go very fast.  If you find additional information for your Boxers, you can add or update the information at any time.

After the paper forms have been entered, the paper forms are returned to you.  When you review each Boxer's profile, you will notice missing information.  Partially due to missing or illegible information on the paper forms and partially due to new information PARS tracks not on the paper forms.  PARS includes a Boxer Quick Update screen for you to  take photos or update information at any time.  You can take a Boxer's photos and update their information in 5 to 7 minutes.

The PARS BAR is a great recruiting tool.  They cannot get this level of assessment and evaluation anywhere else!  Not from their neurologist, not from the Yogi, not from their Tai Chi instructor, not from their Cycling for Parkinson's class.  You will also have statistical answers to the "Does it really work?" question.  Anecdotes are good, but numbers for real boxers are convincing. 

To enroll new Boxers in your program, PARS provides step by step navigation to gather personal info, emergency info, general health and heart info, Parkinson's symptoms and medications.  PARS then takes the coach and Boxer through the PDQ and the physical tests (with detailed instructions and help).  There is a Boxers Observations page to enter coach observations.  A new module is called P-TWET, Parkinson's Typical Weekly Exercise Targets... it is an interactive exercise planner specifically for people with Parkinson's.  And last, the Boxer is presented with opt in pages for media release, research participation and privacy statement.

When done with the assessment, PARS brings the coach to the BAR, the Boxer Assessment Report, to discuss results.  The coach then emails the BAR to the Boxer to share with their family and their neurologist.

PARS provides several features to simplify Boxer assessment scheduling and management. 

First, each Boxer has a next assessment due date.  The system defaults to 6 months from their last assessment but the coach can change that to anything they chose.  Second, the system provides an upcoming assessments list (next 14 days) and an overdue assessments list.  

Best of all, PARS provides several assessment scripts:  1) new boxer intake, 2) reassessment, 3) entry of an existing boxer's historical data.  As an example, here is a description of the new boxer intake assessment. 

1. The New Boxer Enrollment script takes you from "what is your name?" to "welcome to boxing for Parkinson's".  A 14-step process beginning with personal and emergency information including taking their picture followed by Parkinson's symptoms, medications and general health and heart issues. 
     
2. PARS takes the boxer through the PDQ, one question at a time.  No missed questions (or pages).  And it immediately organizes the PDQ into its 8 categories with scores.  Very easy to talk with your boxer about what it says about their perception of their quality of life considering their age, general health and Parkinson's.
     
3. Next, PARS goes through the physical tests:  FAB, TUG & S2S.  Timers and even a metronome are right on the screen. 
      
4. PARS includes a Boxers Observations page for comments and miscellaneous information.
      
5. PARS scores everything using an easy-to-explain 100-point scoring system and organizes it into a Boxer Assessment Report, the BAR.  It displays the report right on the screen and you can send a .pdf of the report to them by email.
      
6. When done, PARS includes acceptance of our privacy statement and permission to be included in the Boxers with Parkinson's research project.  They can opt out if they like.

The other scripts are similar.  The enter existing boxer script is designed using quick-forms for the PDQ and the FAB/TUG/S2S so entering an existing boxer is very quick. 

Members can manage multiple locations from one login and can move from location to location quickly.  Coaches sign in to specific locations and they can be limited to one location or given permission to see other/all sites for their member.  

In addition to convenience for the member, having one membership saves money.

As defined by the National Institutes of Health, Patient Registries are “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical or policy purpose(s).” In brief, a patient registry is a collection of standardized information about a group of patients who share a condition or experience. The use of “patient” in patient registries is often used to distinguish the focus of the data set on health information.  Within the BwP Project, all participants have Parkinson’s Disease and we substitute the word “patient” with “Boxer”.

According to the National Institutes of Health, “Registries can be used to recruit patients to learn about a particular disease or condition; to learn about population behavior patterns and their association with disease development or for improving and monitoring the quality of health care.”  Patient registries can also be used to monitor outcomes and study best practices in care or treatment.  They may pursue a specific, focused research agenda, collecting data for a limited time to answer a specific research question (or questions), or may collect data on an indefinite basis to answer a variety of existing and emerging research questions." 

Patient Reported Outcomes:  Who knows better what a Boxer is feeling or experiencing than the Boxers themselves.  The BwP Project uses the PDQ-39 to allow a Boxer to report on their perceptions of how age, their general health and Parkinson's are impacting their quality of life.  The system allows a Boxer's to compare their perceptions of their quality of life over time.

PDQ-39 (Parkinson’s Disease Questionnaire)

• 39 questions in 8 Categories
     
• Boxer self-survey to measure their perceptions of how age, general health and Parkinson’s impact their quality of life
     
• Through reassessments, we measure how fitness and conditioning, the boxing skills and drills, and Parkinson’s focused balance and movement exercises, and the comradery of the programs affect their perceptions over time.

Coach Administered Tests:  The BwP Project uses coach administered physical tests to measure a Boxers capabilities and limitations over time.  Using nationally recognized tests and being able to compare them to previous tests show progress or regression on a test by test basis.  Providing a 100-point normalized scoring system makes the test results easy to understand.

The BwP Project is based on a robust centralized database in the cloud and an interactive tablet app as the primary data capture device.  This allows us to standardize the data and make it available for reporting and analysis from a single service.  PARS will provide a research portal for authorized groups to access and work with the data.

Along with a menu of frequently used reports, analysts will be able to generate custom reports.  While the portal is in development, BwP can provide reports by request.