For many patients and their families finding the correct information on their condition is key to helping them manage it effectively. Increasingly we look for health information on line but it’s important that the sites and resources we use are from reputable and trusted sources, and that the information provided is in line with best practice guidelines.
The internet is a supplement, not a substitute, for the care and advice people receive from health professionals but it is a very useful support to many living with chronic conditions and tools and resources in this area are continuing to develop and innovate.
One issue to be aware of is data protection in relation to the sites you visit. This is particularly important where health information is concerned. If you are sharing information about your health on a website or digital tool/app it is important that you know what your rights are and what use this information will be put to. If you are not sure about how your data is used you can view the privacy policy of the site, before sharing information with them. Some sites for example sell the information they gather to external third parties, and some do not. In any instance where they are sharing this information they should state so clearly in their Privacy or Data Protection Policies, and these should be easy to find on their website.
Knowing the source of the information is also important, for example is it from a commercial organisation or not? Many commercial sites have useful information but it is important that you as a patient know whether a site you are using is from a commercial or patient organisation source. This helps you to make an informed decision about how you interact with the site and what information you might share.
If you are informed about the source of the information and what will be done with your data you are in a better position to make your own judgement about what sites to use for health information. Transparency is key.
A selection of websites that we have reviewed that provide information and tools for both asthma and COPD are outlined below. Many of our member organisations also have interactive websites and tools, and you will find links to their individual websites here. Contact the patient organisation in your country for further information and advice.
Feel free to visit the sites themselves for more information.
Online Asthma Education and Engagement Tools
My Life my Breath http://www.mylifemybreath.com/
Mylifemybreath.com is a website developed to help patients with asthma, their families and carers, and anyone interested in learning more about the condition and how to manage it.
The site is supported by Novartis and was developed with the help and input of specialist experts, including doctors, allergologists, paediatricians, respiratory specialists and patient groups It seeks to support patients with asthma to lead a happy life, and to empower them to take ownership of their condition.
The site includes a range of information on the condition. One section, entitled ‘Me and my asthma, knowing the facts’ includes a series of asthma FAQ’s, as well as information on how asthma might be diagnosed.
The section ‘Have you had enough of your asthma?’ contains tips and hints for living with asthma, and minimising your risk of an attack. It also includes some FAQ’s and resources to help you get the most out of your doctor’s appointment.
The section entitled ‘What can make my asthma worse? ’ includes information
The site also contains a useful self-assessment questionnaire.
Learning to Live with Asthma https://www.youtube.com/user/EuropeanEFA
EFA’s “Learning to Live with Asthma” project aims to answer important questions for asthma patients about coping with asthma-related problems.
This project examined how experienced, well-controlled asthmatics can help newly-diagnosed asthmatics (NDAs) cope with asthma in daily life, using key messages with non-medical content.
This patient support project aimed to provide a better understanding of day-to-day life with asthma and to promote cooperation and communication between doctors, nurses and patients.
The project consists of a series of eight short videos, to engage users through accessible and visually stimulating online content. The videos can be viewed on the EFA YouTube channel.
Excellent asthma therapy requires more than just good medical care and effective drugs. It is the perfect combination of medical care, up-to-date information about the illness and a supportive environment which allows day-to-day life with asthma to become a routine. The information and practical tips provided by a peer support group, as demonstrated in the videos, can help NDAs cope better with their new situation.
Online COPD Education and Engagement Tools
COPD Life is Calling http://copdlifeiscalling.com/
This site has information on COPD itself, but its main aim is to encourage patients with this condition to live life to the full.
COPD: Life is Calling is a global campaign launched to help people living with COPD to obtain a better quality of life. The campaign encourages people living with the condition to take on personal challenges and use a set of support tools in order to accomplish their challenge. The campaign includes a website as well as a Facebook Page, and is led by Novartis Pharma AG.
The website content has been translated from the original English version into several other languages, including French, Portuguese, Spanish and Dutch.
Visitors to the site can take inspiration by viewing the challenges of others, or submit their own specific challenge.
Some examples of challenges from around the world include:
• Helping a friend with COPD
• Being more active
• Lose some weight to help my health
• Improve my lung function
• Take my grandchildren to the park
Another useful section of the site is themed ‘Start Today’ and is aimed at helping patients to get the most out of their visit to the doctor. This section includes a simple guide to support patients before, during and after their next appointment, you can print or download the guide and take it to your next doctor’s visit.
For more information and to set your own COPD challenge visit http://copdlifeiscalling.com/
Living with COPD http://www.webmd.com/lung/copd/living-with-copd-15/default.htm
This content is selected and controlled by WebMD's editorial staff and provided by COPD Foundation. It is a good example of a popular online medical information site seeking out content from a trusted provider such as a patient organisation.
The site provides several articles covering the condition: an overview of what COPD is, how it is treated, and how it changes over time.
It includes video content covering many of the same topics, engaging patients who prefer to receive information a visual format.
You can view or download a handy guide with 10 questions to ask your doctor, helping ensure you get the most out of your next consultation.
Visitors can also take an interactive and engaging quiz on the myths and facts regarding COPD.
For those patients who want to get involved further it provides a link to engage with the COPD Foundation and join their interactive, collaborative community: COPD360social. You can join and learn about events in your area, participate in research, chat with the experts, and learn how to take action -- all on your time, at your pace.