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Invitation to Participate in Tele-Wheelchair and Seating Assessment Stakeholder Consultation Study

You are invited to take part in a study, exploring your views on the value of a telehealth complex-wheelchair assessment service. Your views will help researchers decide if a telehealth wheelchair assessment could work in NZ.Principal Investigator: Dr. Fiona Graham Senior Lecturer
UNIVERSITY OF OTAGO, Wellington New Zealand
Email: fi.graham@otago.ac.nz

Summary

Well-designed and carefully fitted wheelchairs are often an essential first step towards inclusion and participation in society for people with disabilities. Complex wheelchair assessment requires the skills of highly specialised assessors. Access to these specialists can be delayed and require considerable travel-either by the wheelchair user or assessor. Even for urban living wheelchair users, travel to specialist assessment services can negatively impact health, cause fatigue and impose considerable stress on support systems. Tele-wheelchair assessment (via video conference) is currently in ad hoc use in NZ to improve access to specialist assessment. However, there is currently no policy or infrastructure to support wider use of telehealth wheelchair assessment and no existing information on which to robustly plan for such a service.

Objectives

  1. What are the socio-technical design requirements of a tele-wheelchair assessment service in NZ from the perspectives of wheelchair users with NMC, their family and carer, specialist and non- specialist assessors, managers, funders and policy developers?
  2. What are the culturally specific perspectives and needs of Māori wheelchair users with NMC, of a tele-wheelchair assessment service?

Methods

The proposed study is an explanatory (two phase) mixed methods consultation with key stakeholders exploring their perspectives on the value of a telehealth complex-wheelchair assessment service. A two-phase mixed methods study design is proposed involving an electronic survey (Phase One) and video-conference interview/focus group (Phase Two) data collection with all stakeholder groups.

Population

Stakeholders are wheelchair users with neuro-muscular conditions, their carers and significant others, wheelchair assessors and technicians, and wheelchair service managers, and funders.

Expected Outcomes

Findings will inform a subsequent co-design of a telehealth wheelchair assessment service for those with complex wheelchair needs in a subsequent study and inform policy development of such a service with particular attention to the needs of Māori. Three publications and two conference presentations are anticipated from this study.

Want to Participate?

If you wish to participate, please complete the consent form (listed below) and email the completed form to Fiona Graham: Fi.graham@otago.ac.nz

Documentation

The Participant Information Sheet will help your clients decide if they’d like to take part. Before they decide they may want to talk about the study with other people, such as family, whānau, friends, or healthcare providers. If they agree to take part in this study, they will be asked to indicate their consent.

Approval Letter

Telewheelchair Study Protocol (27-03-2019)

Peer Review

Patient Information Sheet

Consent Form

Contacts

If you have any questions, concerns or complaints about the study at any stage, you can contact:

Dr. Fiona Graham

Lead Investigator
Email: Fi.graham@otago.ac.nz

Jasjot Maggo

Research Assistant
Email: Jasjot.maggo@otago.ac.nz

For Maori health support please contact:

Bernadette Jones (RGON)

Research Fellow
University of Otago, Wellington

M: +64 27 600 3868

This study has been approved by the University of Otago Human Ethics Committee (Health). If you have any concerns about the ethical conduct of the research you may contact the Committee through the Human Ethics Committee Administrator (phone +64 3 479 8256 or email gary.witte@otago.ac.nz). Any issues you raise will be treated in confidence and investigated and you will be informed of the outcome.

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Andrew Cushen

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Andrew is an independent corporate affairs and strategy consultant, working and living in Auckland. He has previously held senior positions in a number of corporate and not-for-profit entities in New Zealand.

Across his career, Andrew has worked as a funder of research projects (albeit in different areas than medicine and health), served in a number of not-for-profit governance roles, and been successful in developing and implementing collaborative funding models to extend investment in research and community programmes.

Andrew’s interest in Multiple Sclerosis stems from his father’s diagnosis with progressive MS in the early 2000s, and he is keenly interested in research, treatment and management approaches that may lessen the impact of MS on those diagnosed and their families.

Julia Howell

Trustee

Julia is a qualified nurse and midwife, with a varied career including specialising in eating disorders, primary healthcare, and management.    

Julia, in partnership with a GP, set up an outpatient clinical trials unit (Southern Clinical Trials). Under her leadership this grew into a network of 6 sites across NZ. This network merged with another one in 2021 to form PCRN, NZ’s largest clinical trials network. Julia is currently working as joint COO for PCRN.

Julia’s daughter was diagnosed with MS aged 14 and she has been intimately involved with her management over the years.

 

Jan Campbell

Trustee

Born in Ōtautahi Jan trained as a nurse in Christchurch, as a midwife in Winchester, UK and has a degree in philosophy with particular interest in healthcare and business ethics.

After working in the public health system in the UK and NZ, Jan joined Roche Pharmaceuticals based in Auckland in 1999. As a respected senior leader and Medical Director, she established a medical division over the ensuing 20 years responsible for significant investment in clinical trials in NZ, developing a top-class global medicine information service, compassionate medicine supply for kiwis in need, pharmacovigilance oversight and a team working closely with patients, specialists, MEDSAFE and PHARMAC to support the safe and appropriate use of Roche medicines.

As a retiree Jan has volunteered for Mercy Hospice in Auckland and the WBoP Museum in Katikati. Now living in Ōtepoti, Jan sits on both the MS Research Trust and MSNZ executive committees with a keen interest to ensure people with MS get a fair go in NZ.

Dr Elza Cloete

Trustee

Elza is a Neonatal Paediatrician at Christchurch Women’s Hospital. Originally from South Africa, she moved to New Zealand in 2006 and completed her specialist training in Auckland.

Subsequent to that she embarked on doctoral studies at the University of Auckland’s Liggins Institute and obtained a PhD investigating congenital heart disease in new-born babies.

Elza received the Vice-Chancellor’s award for best doctoral thesis for her research and is the author of several research publications. She moved to Christchurch in 2020 for a work opportunity in clinical practice.

Elza was diagnosed with MS in 2012 and brings a consumer perspective and research experience to the Trust.

Dr Ernie Willoughby

Trustee

Dr Willoughby has been a consultant neurologist at Auckland City Hospital (1979 to 2021 – now retired, emeritus) and clinical associate professor at Auckland University School of Medicine.

He directed the MS clinic at Auckland Hospital, has had a long association with the Auckland and NZ MS Societies, and is a member of the International Medical and Scientific Board of the MS International Federation.

Dr Brian Linehan

Independent Trustee

Dr Brian Linehan is a retired pathologist who was previously Managing Director of Medlab Hamilton.

He is currently Chairman of the Tranmere group of investment companies and a Director of a number of other private companies. In 2014, he retired after 12 years on the Council of the University of Waikato where he was Pro-Chancellor.

He is a past Chairman of the New Zealand Medical Association, past Chairman of NZMA Ethics Committee, past President and Chairman of CMAAO (Combined Medical Associations of Asia and Oceania) and past Chairman of IANZ (International Accreditation NZ).

Brian was diagnosed with MS in 2007 but is still active and mobile.

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Treasurer

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Peter was a respected and trusted advisor to many businesspeople.
He is now resident in Auckland and consultants to a limited number business clients.

He has also served his community through involvement with Jaycees, Lions and Rotary clubs and a number of charitable trusts.

Peter is currently the Treasurer of Multiple Sclerosis Auckland and a trustee of the Multiple Sclerosis Auckland Trust. Peter is a Justice of the Peace and a member Governance New Zealand and is a Fellow of the NZ Trustees’ Association.

Neil Woodhams

Trustee

Neil is an independent health management consultant who has had an extensive career in health management as a senior manager or consultant to government, DHBs, primary care and community providers. 

Neil is President of MS New Zealand and a trustee of the MS Auckland Region Trust. Neil was also President of MS Auckland until he stepped down from this role mid-2020 to concentrate on his national roles.

Neil’s wife was diagnosed with MS in 1994. One of his four sons was also diagnosed in 2010.

Neil strongly believes in the objectives of the NZ Multiple Sclerosis Research Trust and has advocated for the establishment of the Trust for over 10 years.

Sir William Gallagher

Trustee

Sir William is renowned as a motivational, pragmatic and hands-on businessman in and outside of New Zealand and has a reputation both as a dynamic leader and one of NZ’s most astute businessmen.

Still very involved in the daily operation, he maintains regular contact with customers in the 130 countries in which Gallagher products are sold spending up to 150 days a year on the road representing the company and its philosophies and emphasising the ethics and integrity of his professional and personal dealings.

His achievements have been officially recognised by a string of awards, the latest to mark his commitment to enterprise and leadership skills being his Knighthood in the 2010 New Year’s Honours List. He was also the 1996 winner of the prestigious Excellence in Communication Leadership award, the first time in its history that it had been awarded outside of North America. He also received an MBE in 1987 followed by a Companion of the New Zealand Order of Merit (CNZM) in 1998.

Sir William Gallagher - KNZM, MBE. HonD

Patron

Sir William is renowned as a motivational, pragmatic and hands-on businessman in and outside of New Zealand and has a reputation both as a dynamic leader and one of NZ’s most astute businessmen.

Still very involved in the daily operation, he maintains regular contact with customers in the 130 countries in which Gallagher products are sold spending up to 150 days a year on the road representing the company and its philosophies and emphasising the ethics and integrity of his professional and personal dealings.

His achievements have been officially recognised by a string of awards, the latest to mark his commitment to enterprise and leadership skills being his Knighthood in the 2010 New Year’s Honours List. He was also the 1996 winner of the prestigious Excellence in Communication Leadership award, the first time in its history that it had been awarded outside of North America. He also received an MBE in 1987 followed by a Companion of the New Zealand Order of Merit (CNZM) in 1998.