Request from VENTure

[in...@ventusers.org]

 

 

During the eVENT,  Pramad Gaur is presenting the following (see abstract below) and is looking for three vent-users to help him "blueprint their daily activities and then plan how we can apply technology solutions."

 

 Can you spread the word about the request? He has a student assistant, who would be in touch. We got this idea out of the presentation he gave last year, about how understanding the everyday realities of disabled peoples lives (and all their spheres of need) is necessary in order to be able create good tech solutions. I asked him if this year he could apply his matrix to vent-users and that is what he is proposing to do below. However he needs three vent-users to help provide the info needed. Time is short as the eVENT is Oct 19th, just a few weeks away.

 

 Here is his abstract:

 

 Use of Interoperable Telehealth Technology to Customize Clinical and

Social Care Workflow Driven Use Cases

Innovations in medical devices and information & communication technologies have led demonstration of the most synchronous and asynchronous telehealth solutions and use cases. Both federal and state government programs have supported many pilot studies that show high potential for success in sustaining disease specific care management use cases. However, these disease/condition specific telehealth solutions are not interoperable with other e-health solutions. Thus, these pilot studies are unable to produce scalable and sustainable, patient centric care coordination models ranging from wellness and prevention to acute and post-acute care for total population health management. Recent advances in consumer electronics and big data analytics have allowed a transition to an interoperable telehealth platform solution that can be customized for each individual patient’s unique social and clinical needs. For example, a disabled person who is dependent on a ventilator requires unique social and clinical workflow and their care requires data interoperability between caregiver, case manager, family members and other key stakeholders. A blue print was developed to map total workflow of a ventilator dependent person and interoperable technology components were identified to build a customized telehealth solution. Importance of key stakeholder’s engagement and incorporating their needs in designing a state-of-the-art telehealth solution will be presented.

 

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Pamela Block, Ph.D. Pamela.Block@stonybrook.edu

 

Associate Dean for Research, School of Health Technology & Management

 

Associate Professor and Director, Disability Studies Concentration

 

Ph.D. Program in Health and Rehabilitation Sciences

 

Stony Brook, NY 

 

631-444-3197 (phone)  631-444-6305(fax)  
Pamela.Block@stonybrook.edu

 

[Deshae Lott]

I would help if we can work around my highly regimented schedule. Still need volunteers?

My website is www.deshae.net

It was designed years ago by my husband and is technologically

dated but includes current info.  

Due to progression of muscular dystrophy (ever advancing and causing declines in body) I am a 24/7 vent user since Nov 2002.  I teach online for LSUS.  I do many treatments and therapies daily and am a total care patient.  Understaffed currently by bith my nurse and my aide agencies, I am approved for 18 hrs of LPN care daily and 32 aide hours per week.  My husband fills in all care gaps and helps day and night when others are present; he works full time as a professor but has had made many career sacrifice s and other sacrifices for me (we are in our 25th year together; I am 44; he is 53).

Deshae 

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