ALS Tele-healthA Patient Centered Approach to Care

Rebecca Brittain, RNNeuroscience InstituteUF Health Jacksonville

Objective Discuss the process of developing an alternative

model for current best practice care of ALS patients that maintains patient and team member satisfaction in the ability to provide adequate examination data

Discuss the training required and the implementation of the new process

Discuss the project roll-out, changes needed after first few patient encounters, and work-flow of the Nurse Clinical Coordinator involved in the project

ALS Tele-health• The Bitner-Plante ALS Clinic

Initiative is funded by The ALS Association Florida Chapter and The State of Florida Department of Health

• Project was budgeted for equipment purchase, hire and to train a Nurse and provide reimbursement for clinical work

• Project for year one was developed into IRB approved research

Tele-health• Tele-health and tele-medicine are defined as

patient encounters using either real-time, two-way video conferencing or store and forward of video information

• Platform must be secure - encrypted - for HIPAA compliance. Skype and Face Time are not complaint platforms.

• A “Patient Presenter” is normally used during encounter

Project Objective

• Project must maintain Provider and Patient satisfaction at a level equal to that achieved at the ALS clinic

• Offer clinic opportunities to patients who are unable to attend a clinic

• Expand the clinic access to patients who do not have a clinic located in their immediate area

Project RequirementsEquipment used must be “off-the-shelf”

Equipment must be fully HIPAA compliant, meet compliance approval, and have built-in safety measures

Equipment and process must be able to be used by one person at the patients home

PlanDevelop procedure to deliver the clinic

experience to ALS patients who have difficulity or the inablity to attend a clinic

Encounter must be comparable to live clinic encounter - all disciplines must be able to have examination data collected in order to contribute to the plan of care

Patient/Physician interaction must be comparable to in-person encounter

Finding the “Right” Nurse

Nurses are identified as uniquely qualified in working/performing examinations/assessments commonly used by other health professionals

Intensive Care Nurses have specialized assessment skills

Nurses with experience in the care of ALS patients are few

Finding a nurse who would be willing to take control of this new project

TimeThe clinic encounter requires patients to remain in an

examination room, and each provider rotates thru during the encounter

The team meets to formulate a plan of care for the patient

The plan of care is then presented to the patient by Clinic Coordinator

Clinic experience will usually require the patient to remain in exam room for 2 to 4 hours. Also consider travel time

Assessment ToolsEach discipline was required to either identify

standardized (and when possible validated) examinations or develop one

Equipment necessary to complete the examination was identified and ordered

Notebook of each tool and any additional questions prepared for use during patient encounters

Assessment Tools

Assessment Tools

Assessment Tools

Plan for AssessmentsEach assessment must be performed and recorded

by the Nurse

Problem - Assessments may require the Nurse to come between camera and patient, thereby blocking view

Solution - record from at least 2 different locations, using two or more cameras, based on patient environment/home

Place both videos into side by side or picture in picture format for team review

Video - IssuesVideo Cameras store data on either internal

devices - hard drives - or removable devices - disc or memory cards

Cameras are easily stolen or lost

Data can be recovered from hard drives, disc or memory cards with free, readily available software even after being deleted

Video - SolutioniPad Mini tablets used to record examinations

Require password to open, able to track/locate lost devices, able to remotely erase flash memory

Camera is HD quality. Storage size 32GB -large enough to turn on and record for several hours

Light weight, easy to use, easy to transfer data

My “Co-Worker”

Voice RecordingAs ALS progresses, speech becomes more

difficult as does breathing

Voice pick-up by iPad was good for normal voice volume, but environmental noise or patient condition caused issues

Solution- Blue tooth wireless microphone, recording directly into video

Video ReviewData from tablets transferred to apple

desktop

iMovies used to edit and format

Each specialty assessment partitioned into separate video

Videos loaded onto hospital server for review by team member and notes forwarded to lead physician

ResearchFew articles are available looking at patient

satisfaction using tele-health

None address a hybrid version - store and forward combined with live two-way video

Developed short surveys for completion by patient and provider after each encounter

Project Goals

IRB approval for pilot study

Look at patient and provider satisfaction with process

Study the feasibility of the process

Eligibility ProcessA confirmed diagnosis of ALS by Dr. Pulley

Patient must have attended at least one appointment at the UF Health ALS Clinic

Signed consent and a completed survey of their satisfaction on an office visit

Live in the State of Florida

Encounters2 visits by the Nurse to the patient’s home

equal one encounter

First visit is recording of each team members assessment

Recording is of entire visits non-stop, with editing completed after visit.

Second visit is teleconference with patient/physician

Team DutiesTo meet the goal for turn-around

Team members had 72 hours to review recordings and develop their portion of care plan

Plan was then forwarded to Nurse and Physician

Second visit scheduled within 7 bussiness days of the first visit to meet Physician/Patient needs

Technical Issues

Training

Recording size, transfer rates, storage

Team Member access to files

Wifi Connections

Patient Survey

Patient survey

Provider Survey

ResultsOverall patient satisfaction with telemedicine

was universally high with all survey questions receiving strongly agree or agree

Regular clinic visits more often received responses of neutral, disagree, and strongly disagree in reference to convenience compared to telemedicine

Provider satisfaction was more variable but all providers were able to develop a plan of care for ALS patients using this method

ConclusionsStore and forward method of telemedicine is feasible

as an innovative care model for ALS patientsAllows access to multidisciplinary care for patients with

mobility and other clinic access issuesVery high patient satisfaction and acceptable provider

satisfaction, particularly with the ability to formulate a plan of care for the patient

It is possible to use commercially available hardware and software for such a project

There is a significant learning curve for all involved in the start-up of such projects

Future PlansIdentification of weaknesses in the process

Continued operation of project and development of more in-depth study areas

Identify areas of needed improvement

Determine new ways to continue funding for the project

ALS WALK 2014

Questions???

References

NINDS Common Data Elements (2013). Amyotrophic Lateral Sclerosis. Neurology 76 (March 1, 2011) (Suppl 4), A48-49. Retrieved from http://www.commondataelements.ninds.nih.gov/ALS.aspx#tab=Data_Standards

Nestle Nutrition Institute (2013). Mini Nutritional Assessment. Retrieved fromhttp://www.mna-elderly.com