Study Group Mission
The mission of this study group is to investigate ways of developing telemedicine to improve patient care, education and research for Parkinson’s disease and other movement disorders around the world.
- Firstly, to enlist user-friendly technology to reach and provide chronic care to any patient with movement disorders, anywhere in the world.
- Secondly, to educate health care professionals around the world on management of Parkinson's disease and other movement disorders.
- Thirdly, to leverage technology to increase research awareness and effectiveness for Parkinson's disease and other movement disorders. Fourthly, to serve as a frontier for artificial intelligence (AI) applications in movement disorders practice.
- To help increase access to care and to train providers around the world using technology, the International Parkinson and Movement Disorder Society launched a Telemedicine Task Force in 2012 evolving to a Study Group in 2018. The Telemedicine Task Force efforts resulted in pilot projects in patient care and education to lay the foundations for reaching the majority of people with movement disorders.
Goals
1.) To study new ways and feasibility in which a telemedicine visit can be implemented (e.g. synchronous vs. asynchronous) to extend highly specialized multidisciplinary movement disorders care and to improve access across the world.
2.) To study new ways in which telemedicine can be used to extend virtual research visits for patients with movement disorders to reach underserved areas.
3.) To provide support to the International Parkinson´s Disease and Movement Disorder Society for initiatives regarding educational, research and epidemiological studies.
4.) To validate and study clinical tools (rating scales, etc), diagnostic accuracy, and screening for movement disorders by using telemedicine.
5.) To periodically update the innovative ways in which a telemedicine visit can be implemented: equipment and video software, licensure/registration, financial support/reimbursement, video exam room set up, etc.
Ongoing Projects
1.The Asynchronous Consultations for Movement Disorders (in collaboration with the Africa Committee), led by Mark Guttman.
After a successful launch of the MDS pilot program to provide clinical movement disorders consultations to local physicians in Africa, the ACMD subcommittee secured additional funding to expand the program to additional locations in 2016/2017. This consultation service matches local physicians with consultants, who are volunteer members of the Telemedicine Task Force, to advise referring physicians about the diagnosis and treatment of patients that they would like to have a second opinion. The Asynchronous Consultation for Movement Disorders (ACMD) is a project that has linked the Telemedicine Task Force and the African Task Force since its inception in 2015. The American Society of Association Executives (ASAE) recognized the ACMD program of the International Parkinson and Movement Disorders Society by awarding the Power of A Gold Award to the project in 2018. The MDS has extended funding until 2022 for this project.
2. Palliative Virtual Home Visits for Atypical Parkinsonian Disorders, led by Nicholas Galifianakis, MD, MPH, Alexander Pantelyat, MD
Atypical Parkinsonian Disorders (i.e. MSA, DLB, CBS and PSP) are usually rapidly progressive conditions for which no truly effective symptomatic treatments exist. This unfortunately leads to severe motor but also non-motor disability that includes neuropsychiatric, psychosocial, and spiritual stressors which negatively impact quality of life (QOL). Multidisciplinary care integrating palliative care principles has the potential to improve QOL by prioritizing the relief of suffering. However, the physical burdens of disease in APDs confer a major barrier to this valuable but time-consuming multidisciplinary care. This study set out to determining the feasibility and preliminary efficacy and satisfaction of telemedicine-based delivery of multidisciplinary palliative care to patients with APDs in their own homes, i.e. palliative virtual home visits.
3. Telemedicine in your Movement Disorders practice: A Step-by-step guide, led by Meredith Spindler, Jaime-Hatcher
This Study Group has completed and submitted a tutorial on introducing telemedicine into a movement disorders clinic. The tutorial outlined the steps a clinic must take to acquaint its physicians and patients with the movement disorders technology, including technology software and hardware options and best practices for the first and subsequent telemedicine visits.
Past Projects
1. Telemedicine Survey report, led by Anhar Hassan
Telemedicine is increasingly used to care for patients with movement disorders, but data regarding its global use are limited. In 2015 the Telemedicine Task Force conducted an online survey of all 6056 members of the International Parkinson and Movement Disorder Society regarding their use of telemedicine. There was a 9.1% survey response rate (549 respondents) from 83 countries. Most (85.8%) were physicians, and most (71%) worked in academic/university practice. Half of respondents (n=287, from 57 countries) used telemedicine for clinical care: email (63%), video visits (follow-up 40%, new 35%), and video-education (35%). Video visits were personally conducted by one-fifth (n=105) of respondents, most frequently to outpatient clinics (54%), patient homes (31%)
2. Movement disorders tele education program for medical school undergraduate students in low-middle income countries, led by Esther Cubo
In order to create a feasible, low-cost, web-based tele-education program about Movement Disorders for undergraduate medical students in low-middle, middle-high income countries with poor access to Movement Disorders specialists, the Telemedicine Task Force launched and completed a new course in partnership with University of Douala, Medical School, Cameroon, University of Buenos Aires, Medical School, Argentina. Through this new program, students received a standardized education on moment disorders from world renowned experts via a webinar series. Each site participated in 7 session covering the basics of movement disorder. Either Medical Students from Cameroon or Argentina demonstrated improvement in Movement Disorders Skills after completing pre and post-course assessments.
3. Caring for the majority: A tele-education program for health professionals in Cameroon, led by Esther Cubo
In order to create a feasible, low-cost, web-based tele-education program about Movement Disorders for health professionals in low-middle income countries with poor access to Movement Disorders specialists, the Telemedicine Task Force launched a new course in partnership with University of Douala. Through this new program, family doctors, neurologists, nurses, psychologists, and physiotherapists received standardized education on moment disorders from world renowned experts via a webinar series for one year, once a month. High satisfaction and knowledge improvement was obtained after this course.
4. Caring for the majority: Telemedicine management of Parkinson’s disease in underserved populations in People’s Republic of China: A randomized trial, led by Carolinne Tanner, Piu Chan.
In tandem with a CME course hosted in China, the task force conducted a randomized trial. All participating neurologists received one week training in Parkinson’s disease diagnosis and management. At the end of the week, the community neurologists were randomized either to the intervention group (expert consultation via telemedicine) or to the non-intervention group (routine care without expert consultation using telemedicine). At the end of this study, one year later, adequate feasibility, and high satisfaction was reported among telemedicine users.
Publications
1: Ben-Pazi H, Browne P, Chan P, Cubo E, Guttman M, Hassan A, Hatcher-Martin J, Mari Z, Moukheiber E, Okubadejo NU, Shalash A; International Parkinson and Movement Disorder Society Telemedicine Task Force. The Promise of Telemedicine for Movement Disorders: an Interdisciplinary Approach. Curr Neurol Neurosci Rep. 2018 Apr 13;18(5):26. doi:10.1007/s11910-018-0834-6.
2: Hassan A, Dorsey ER, Goetz CG, Bloem BR, Guttman M, Tanner CM, Mari Z, Pantelyat A, Galifianakis NB, Bajwa JA, Gatto EM, Cubo E. Telemedicine Use for Movement Disorders: A Global Survey. Telemed J E Health. 2018 Mar 22. doi:10.1089/tmj.2017.0295.
3: Cubo E, Doumbe J, López E, Lopez GA, Gatto E, Persi G, Guttman M. Telemedicine Enables Broader Access to Movement Disorders Curricula for Medical Students. Tremor Other Hyperkinet Mov (N Y). 2017 Oct 19;7:501. doi: 10.7916/D8708CXW.
4: Cubo E, Doumbe J, Njiengwe E, Onana P, Garoña R, Alcalde J, Seco J, Mariscal N, Epundugu BM, Cubo S, Coma MJ. A Parkinson's disease tele-education program for health care providers in Cameroon. J Neurol Sci. 2015 Oct 15;357(1-2):285-7. doi:10.1016/j.jns.2015.07.019.
5: Achey M, Aldred JL, Aljehani N, Bloem BR, Biglan KM, Chan P, Cubo E, Dorsey ER, Goetz CG, Guttman M, Hassan A, Khandhar SM, Mari Z, Spindler M, Tanner CM, van den Haak P, Walker R, Wilkinson JR; International Parkinson and Movement Disorder Society Telemedicine Task Force. The past, present, and future of telemedicine for Parkinson's disease. Mov Disord. 2014 Jun;29(7):871-83. doi: 10.1002/mds.25903.
6: Srinivasan R, Ben-Pazi H, Dekker M, Cubo E, Bloem B, Moukheiber E, Gonzalez-Santos J, Guttman M.
Telemedicine for Hyperkinetic Movement Disorders.Tremor Other Hyperkinet Mov (N Y). 2020 Feb 17;10. doi: 10.7916/tohm.v0.698.
Abstracts Presented at International Movement Disorder Congresses
2018
1. Asynchronous Consultation in Movement Disorders: The East Africa Hub
M. Dekker, S. Urasa, S. Guttman, W. Howlett, M. Guttman (Moshi, United Republic of Tanzania).
2. Palliative Virtual Home Visits for Atypical Parkinsonian Disorders (PVH-Park Study)
M. Afshari, A. Butala, J. Guenther, A. Pantelyat, N. Galifianakis (San Francisco, CA, USA).
3. Asynchronous Telehealth Consultations for Movement Disorders in Africa
J. Guenther, M. Katz, E. Cubo, N. Galifianakis, S. Guttman, N. Okubadejo, M. Spindler, J. Aldred, M. Guttman (San Francisco, CA, USA).
2016
1. Caring for the majority: Telemedicine management of Parkinson’s disease (PD) in underserved populations in People’s Republic of China: A randomized trial
P.B. Chan, S. Liu, Z. Gu, J. An, C.M. Tanner (Beijing, People’s Republic of China)
2. Survey of telemedicine use among MDS members
A. Hassan, E.R. Dorsey, E. Cubo, C.G. Goetz, B.R. Bloem, M. Guttman, S.L. Heath, M. Katz, M. Spinder, C.M. Tanner, Z. Mari, A. Pantelyat, J.A. Bajwa, N.B. Galifianakis, E.M. Gatto (Rochester, MN, USA)