Disabilities
Government Priorities in New Zealand Healthcare for the Disabled and Disadvantaged
- Every health organisation collects patient healthcare information.
- Health results to be made available to clinicians.
- By 2014 an individually owned health record by all New Zealanders.
“Health IT is hard because it is a reflection of a culture and its beliefs”.
“Where do the 5%-10% of people with different disabilities and chronic illnesses, who actually really need improved health information management systems and who are obviously among the most costly to treat, fit in this system? Will we have to wait till 2014 or beyond until something will be available? Would it be an idea to put something out there, maybe not very pretty, but something simple, test it, get feedback from the users, improve, test again, get feedback, improve etc? We can quite quickly develop something which can change not only how the data is managed but actually positively impact the lives of many people and organisations who are supporting them, leading the way to transformation of medical industry.”
Our First Community Group Meeting! (Part 2: Question & Feedback Session)
The participants from various organizations definitely saw the idea as an innovative way forward. Some great examples were brought up on why and how such a system could contribute to creating better health outcomes, provide economical advantages and prevent mistakes and oversights, and halt a growing inequality of health care access, stress and disengagement.
It was a great learning experience to see how lack of adequate health information for those disadvantaged such as the blind, deaf, sick children, people with chronic diseases, parents and caregivers ethnical groups leads to inability to manage, monitor or even access appropriate health care. For use by the blind the tool would need integration with ‘talking data’ but it was considered to be very positive for the hearing-impaired, as a very needed communication tool with health professionals. Also some noted this would be a great tool for recording children’s health – as children`s complete information is usually only known by the parents, but when the child reaches adulthood this information can be forgotten, or not passed on etc.
Almost 40 minutes discussion among 13 participants brought up lots of issues. The main ones examined were privacy and security. Some participants made the counter point that Lifetime Health Diary can be useful for privacy issues. Additionally some commented that privacy waivers are common place. The consensus seemed to be that perfect privacy and security are an ideal that must be strived for, but that it is even more important to simply start.
One example was given where deaf people health consultations often result in shouted conversations in front of other people, whereas this kind of Diary could act as a mediation tool.
Some barriers in uptake were identified as well. Computer literacy, access to the internet, cultural readiness and acceptance were those listed by participants.
Everybody`s involvement was definitely a sign of a great need to address current problems in a fast and cost efficient manner. The bottom-up approach was seen as the way to go, as community-based solutions are needed. Although many questions were fielded, there was a huge recognition and understanding that the Diary is a positive way forward and although there are no perfect solutions to some of the issues, a start needs to be made.
Funding
The participants suggested a couple of funding opportunities including the Tindall Foundation and Working Together More Fund, the Health Innovation Fund at the ACC, The Ministry of Health and some internal programmes run by participating organisations expressed their readiness to work together.
First steps forward
First step needs to be taken! The opportunity to do so will be in a study run by a team of Ignite Consultants. From Monday 23rd of August, five highly motivated, talented and hand-picked students will start to explore how Lifetime Health Diary™ can be helpful for different community groups. Study will be concentrated on the readiness of particular communities, including examining the motivation, perception, potential barriers, as well as looking into the usability of the technology which needs to be adjusted to the specific needs of people on the ground. The team of students will be working for 8 weeks under the guidance of Alec Holt, the Director of the Health Informatics programme at Otago University as well as mentors from the not-for-profit community
We believe that by working collaboratively on enabling the most disadvantaged in our communities and their caregivers to have better access to relevant and needed health information (which they can share with their doctors and other health professionals) can truly lead not only to better health outcomes, but significantly improve the quality of lives, engage and empower people to take charge of their health.
The Project is about to start…!
Our First Community Group Meeting! (Part 1: Introduction)
Yesterday, with help of Sue Russell from DCOSS, Ignite Consultants held a meeting under the theme: Healthy Community Enabled by Information: Social Innovation at Work. Representatives of nine different organisations attended. Despite very short notice they kindly came to share their ideas and feedback on what can be done to address some of the problems arising due to inefficient information management systems between patient, doctors, caregivers and other parties engaged in patient health management.
We started the meeting with everybody introducing themselves, I gave a short introduction followed by guest speaker Hamish MacDonald who presented his innovative technology, Lifetime Health Diary™
I met Hamish nearly one year ago, when running my Social Entrepreneurship Project. He approached me to tell me about the global mission of his company including the 5 billion plus of those who are the most health disadvantaged in the global community, including even in our communities such as the disabled, cultural minorities, people living with chronic conditions, the elderly, etc. who very often face significant challenges in obtaining adequate access and delivery of health services.
But it wasn’t till 2 months ago when he actually showed me what, together with his team, he managed to build and how the vision becomes reality. Intrigued, and seeing a huge potential in how this tool could help people with different disabilities, I took the idea to different organisations to see what they thought. The response was overwhelming.
Lifetime Health Diary™ is a secure, free, patient-owned, internet-based health diary for recording, monitoring and self-managing one’s health, as well practice health prevention. It captures and systemizes all data inputs into an easily understandable “Graphic Natural History” of your heath through lining up all your data by temporal correlation – which is a fancy way of saying your background lifestyle factors and life events are lined up by date alongside your clinical data. This allows your unique clinical story to be better understood by clinicians and caregivers that you personally invite by secure email link to view your health record.
During the meeting Hamish talked about his friend and business partner, Dr. Atsushi Matsunaga, the inventor of the software and a person very frustrated with the inability of the healthcare system to prevent illness in the first place. Hamish shared the history and idea behind the innovation outlining 7 Requirements for the system: i) Better health outcomes for you; ii) Quicker prognosis for your doctor; iii) Shared Patient Care among your Caregivers; iv) Interoperable amongst their different systems; v) All under your Control, vi) Transferable; Accessible, Portable & Private; vii) Free for both you and your doctor.
Hamish finished his short talk, and suddenly, “Access to information”, “Better health care delivery”, “Control and empowerment”, “Patient in the centre of the health system”…a lively discussion had suddenly started and Hamish was under a stream of questions. Details in the next blog post…!
The Project: A Healthy Community Enabled by Information
The project is a result of a partnership between Ignite Consultants and Lifetime Health Diary Ltd and a number of community groups. We all see a great need to address some of the pressure and problems resulting from the inefficiencies of the current health information management system. A significant slice of the population is not receiving the healthcare they should be, for a variety of reasons. This only makes all of society poorer, as their conditions and quality of life get worse and more expensive to treat than would otherwise be the case with timely interventions.
We believe in a bottom-up approach and harnessing the power of technological innovation, academic expertise matched with real needs of real people on the ground, powered by the spirit of young, talented students who want to make a difference.
We want to work together to, in a collaborative manner, enable cost-effective solutions and drive a movement of access, empowerment and knowledge in healthcare.
I am thrilled to be a part of it and I truly believe that this is the beginning of an exciting journey of collaborative effort to not only empower those the most disadvantaged to live better lives but transform the way we manage our health and interact to create a healthy community enabled by information.
We want this blog to be a communication platform for everybody who is involved and who is supporting this initiative, to share ideas and track our progress. Let`s get it started!
iPad, healthcare and those with disabilities
I am always fascinated with new technology. But I am fascinated even more when these cool gadgets find their way to solve the problems of minorities and those with disabilities, or improve healthcare delivery, or both.
That is why I am so impressed how iPad (which initially when released was no more than another super cool gadget for me) is slowly becoming a valuable tool in a doctor’s office. It proves to positively impact doctor-patient communication and allows patients to better understand their condition. Besides that, iPad represents a completely different, very rich visual experience when using EHRs, or any other applications.
I am also impressed with iPad being able to help those with medical disabilities. As the article points out iPad is very easy to navigate for the patients who are suffering from Parkinson’s disease and for anyone with diminished fine motor skills and other disabilities.
As it turns out, iPad may be opening opportunities for healthcare system to engage more those with disabilities and help them better communicate with the doctors so to improve health outcomes. Would love to see that happening… sooner rather then later.
