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We’d like your help to develop a new strategy (plan) for Spinal Impairment Services in New Zealand The Ministry of Health (MoH) and the Accident Compensation Corporation (ACC) are working together to develop a plan to improve services for people with spinal cord impairment. To help us gather the information we need to develop this plan, we’d like to interview people who use these services, as well as their families/whanau or carers. We’re interested in hearing what works, what doesn’t work, and what could be done differently in the future. ACC’s Research Department will manage the process on behalf of the MoH and ACC and have already commissioned an independent research company, UMR, to talk to individuals, families/whanau and carers directly. We’d really appreciate it if you would agree to take part in the development of this plan and to show our appreciation we’d like to offer you a $40 grocery voucher for your time and effort, if you agree to take part. Your input will help us to improve services to all people who have experienced spinal cord impairment as well as their families/whanau and carers. We’ve provided answers to some questions you might have below to help you make your decision. If you’d like to be involved or have any questions or need any further information about this study, please contact either Dr Sarah Carne directly on 04 819 5115 (email Sarah.Carne@acc.co.nz ) or Emma Scheib on 04 816 6499 (email emma.scheib@acc.co.nz) between 9.00am and 5.00pm Monday to Friday. Yours sincerely

Dr Sarah Carne ACC Senior Research Advisor

Emma Scheib ACC Research Advisor

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ANSWERS TO QUESTIONS YOU MIGHT HAVE Who is conducting the interviews? UMR, an independent research company, will run the interview. Who does UMR want to talk to? UMR would like to talk to people, families/whanau and carers who have experienced spinal cord impairment. We may not be able to talk to everyone who contacts us, however we do want to make sure we include a wide range of people. What are the interviews for? The interviews are to find out first hand experiences from people who have used spinal cord impairment services. We want to know what works, what doesn’t, and what could be done differently in the future. Your feedback from the interview will be used to write a strategy (plan of action) for spinal cord impairment services across New Zealand. Who has approved this study? This study has received approval from the ACC Ethics Committee. Ministry of Health ethics approval was not required. What will UMR be asking you to do? If you agree to take part in this study, UMR will contact with you within three weeks of receiving a letter of invitation. During the interview (which will last for about one hour), you’ll be asked about the spinal services you’ve received and what you think could be changed or improved in the future. Who else would UMR like to talk to about the spinal injury services you have received? As part of the study, UMR would also like to speak with family/whanau members and/or carers to find out their perspective of the services too. Will the information you provide to UMR be confidential? Yes, absolutely. UMR is bound by ACC data security policies. All information relating to you as a study participant is confidential. No one other than UMR research will have access to information that you provide. Data collected during the study will be stored confidentially. The stored data will only contain your first name or a number and the findings of the study will be reported to ACC in such a way that no individual can be identified. At the completion of the study, the information used to contact you will be destroyed. Information such as transcripts and recordings of the interviews will be securely stored and destroyed after two years. Are you free to withdraw if you change your mind? Yes, of course. Your participation in this study is entirely voluntary (your choice). If you agree to take part you still have the option to withdraw from the study at any time, without having to give a reason and without affecting your future health care (through MoH or any entitlement resulting from your ACC claim). If you do withdraw at any stage please be assured that any information already collected in relation to the study will be destroyed. What are your rights as a participant in this study if you agree to take part? If you have any queries or concerns regarding your rights as a participant in this study you may wish to contact a Health and Disability Advocate, by calling 0800 555 050, or emailing advocacy@hdc.org.nz

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Spinal Cord Impairment Study