Moves are afoot to establish a website to enable people to share their experiences of living with disability. The website would be modelled on a similar project in the UK enabling patients to share their experiences.
Professor Niki Ellis, director of The Institute for Safety, Compensation and Recovery Research (ISCRR), hopes that such a website could bring direct benefits for people living with disability, including reduced social isolation and better access to information, as well as helping to ensure that their experiences can inform policy.
This would be particularly timely as we move towards a National Disability Insurance Scheme, she says. If you’ve ideas for the website, now is the time to speak up.
What can be learnt from the stories and experiences of those with disabilities?
By Professor Niki Ellis
When British GP, Dr Ann McPherson, was battling breast cancer, she found that while she possessed a wealth of knowledge, she had no one to talk to about the personal and emotional side of her disease. Similarly, British pharmacologist Andrew Herxheimer found there were few support resources online when he was recovering from knee replacement surgery.
This need to connect and communicate with others who were experiencing the same problem prompted them to develop a patient experience website.
The Database of Individual Patient Experiences (DIPEx), a UK health charity, was co-founded in 2001 and works closely with the Health Experiences Research Group at the University of Oxford. The Oxford group uses sociological methods conducting in-depth qualitative research into over 50 different illnesses and health conditions.
HTO is not just a health information website nor is it a patients’ chat room, or one of the many websites that has an area for patients’ experiences. Instead, each interview is a rigorous qualitative research study on the experiences of the person facing the condition or health problem. Another important difference is that the research is patient directed and the interviewer does not control content unlike other qualitative research.
New research shows that patient experiences of health and illness available in the form of stories are not only valued by patients for their insight but may also improve outcomes. Personal stories are able to create a sense of empathy and solidarity among people with similar experiences and overcome feelings of isolation. Stories about
other people’s experiences of health and illness have the potential to provide insight, build resilience and help people to cope. The research shows that such stories can complement clinical and biomedical information, aid decision-making, promote self-management of chronic conditions and help build better relationships between patients and healthcare professionals as well as reduce feelings of isolation and alleviate distress.
As a rich and developing pool of information about people’s experiences of health and illness, the Internet can be harnessed for numerous purposes.
A website like HTO could play a vital and unique role for people living with a disability in Australia, as a tool for accessing information and social networking.
Based on the successful HTO model, the proposed website would be an Australian resource for people with disabilities, their carers and service providers. Monash University researcher, Associate Professor Renata Kokanovic, has worked with HTO and developed a report on depression for beyondblue in Australia.
Such a tool could facilitate access to a wide range of information for people with disabilities including the latest advocacy news, suitable transport and employment. A widely acknowledged disadvantage of the Internet is that information is not necessarily accurate or correct and is often conflicting with other information.
A site like HTO, which offers rigorous and robust research about people’s experiences and is sanctioned by a relevant authority (in the UK, the Department of Health for HTO), would provide a one-stop shop of reliable and useful information and a directory of other helpful resources.
The anticipated benefits of a local and relevant HTO for Australian people with disabilities are reduced social isolation and greater information on subjects ranging from rehabilitation, recovery, relationships, parenting, education to employment and independent living.
The sharing of experiences and knowledge between people with disabilities and their carers would also provide valuable insights into the lived experience and most pressing issues for people living with a disability. This could help improve the awareness of policy-makers, practitioners and carers particularly during of the period of establishing the National Disability Insurance Scheme.
ISCRR welcomes feedback from those working in the disability sector, including those with disabilities, on this proposed website.
The Institute for Safety, Compensation and Recovery Research (ISCRR) is working with Monash University and HTO in the hope they can secure funding and set up a “living with a disability” website. This would be timely at this early stage of setting up the National Disability Insurance Scheme.