What can the internet do for your heart?
Online information is conveniently accessible, private and can enable better understanding of investigations, diagnoses and treatment options- Myra Tilney
‘Not much’ is the kneejerk answer, especially if you act like a couch potato and sit down at your computer all day.
But then, the internet is also our greatest source of information – for instance, if you Google ‘heart’ and ‘health’, you get more than 3,000 million sites that potentially carry relevant information. I say ‘potentially’, because the question here is whether this information is correct and reliable – in fact, many doctors nowadays are faced with patients who are worried about incorrect information which they find online.
When searching for health-related information online, some discrimination is required before you decide whether a website is reliable or not.
Websites hosted by national and international organisations generally adhere to established standards. The Health On the Net Foundation (www.hon.ch) is a non-governmental organisation which aims to provide individuals, medical professionals and web publishers access to trustworthy medical information. Websites demonstrating the HON code should provide ethical, transparent and objective health information that is reviewed and subject to a formal complaint mechanism. This is the most widely used standard which facilitates safe navigation on the web.
Information is constantly available in various forms online. The internet can provide information for both individuals and patients, thus enabling more informed participation in their care. Online information is conveniently accessible, private and can enable better understanding of investigations, diagnoses and treatment options. It enables more dynamic interaction via information sites, e-mail support, quizzes and animations. Youtube videos bypass literacy issues while online social networking enables communities of like-minded individuals to connect.
To search for anything from heart disease to hypertension and stroke, www.webmd.com is one of the most comprehensive websites. It provides validated resources and moderates an online community that is dedicated to self-help.
Another valuable website is www.heartscore.com. This enables individual risk calculation for heart attacks and strokes in an easily comprehensible form. It is an interactive tool for doctors based on population data, provided by the European Society of Cardiology. Other calculators are also available on the same website.
A local website, www.myhealth.gov.mt, allows Maltese patients to share their online health information with their doctor. Security is addressed through the use of the eID, which is the best authentication system available nationally.
The internet is also increasingly being linked to sensors that can help to modify heart health. Blood pressure monitors linking up with health records or social networking sites via smartphones are available on the market, as are WiFi enabled weighing scales.
The internet can also help in heart rehabilitation. Research was recently conducted in patients who had coronary heart disease and were not participating in cardiac rehabilitation. They had a personalised exercise training programme used in conjunction with a secure website for planning and recording activity which was registered with pedometers.
These were compared to a group undergoing usual care. The first group exercised more and had a better quality of life – Cardiofit was thus shown to make a difference in patient care with better outcomes.
Another valuable tool is social media. Online social networks bring together people from geographically distant areas to communicate continuously and conveniently. Social media tools enable instant communication with thousands of like-minded others, who could be partners in working towards a goal. At the same time, these tools permit privacy and anonymity, thus empowering the development of communication that may otherwise be difficult.
Social media platforms are also being used as social support for people wanting to quit smoking. Online support can help smoking cessation and prevent relapse. One example is Quitnet – this website, accessible at www.quitnet.com, uses smoking strategies that are science-based and expert resources, while bringing together an online community where people help one another.
Quitnet claims to be the largest community of quitters with an online community of about 60,000 smokers and ex-smokers.
The Social Heart Study at www.socialheartstudy.org is a social network-based cardiovascular research study recruiting online volunteers to assess their risk for future heart attacks. Users can compare their health with others from different networks, participate in research to prevent heart disease and get access to state-of-the-art prevention research studies. Supporting institutions include the universities of California in San Francisco and San Diego.
Patients with rare diseases tend to find one another because they search for information and online support. They are proving instrumental in leading research by innovation. The website www.patientslikeme.com was launched five years ago by three MIT engineers, two brothers and a friend, to support another brother with a rare disorder called Amyotrophic Lateral Sclerosis. Theirs was an effort to find similar patients for social support and to try to provide the best care possible.
At the time the website went live, a new treatment was launched – the site brought together 100 similar patients who tried the medication in a trial, and the outcome showed it to be ineffective. This website also enables social networking between patients, relatives, and caregivers. It works with research teams, crowdsourcing healthcare data, enabling research and better patient care. Since last year, www.patientslikeme.com has opened up to all conditions and includes groups dedicated to symptoms, conditions, treatments and drugs.
Another powerful social media platform is www.womenheart.org. One woman who wanted to find more about spontaneous coronary artery dissection, a disease from which she suffered, used www.womenheart.org to bring together a group of patients from four different countries, thus enabling a pilot study to take place. Studies into rare diseases tend to face difficulty in collecting enough patients for a valid study and are also frequently underfunded, so this patient-initiated research was truly innovative.
As technology matures, companies are patenting care systems monitoring adherence to treatment, heart rate, breathing, sleep patterns, and activity levels. These use the internet to enable patients with heart conditions to live at home and may be widespread within a few years.
Overall, the internet has changed heart care for the better and is likely to continue to do so as more innovative solutions are developed and become available.
An app a day
The combination of smartphone usage and social media is opening up new possibilities, especially in the form of apps.
Hands Only CPR
Demonstrates what to do when someone collapses.
Healthy Heart Recipe Finder
Developed by the British Heart Foundation, this app helps you find healthy recipes that are suitable for those suffering from high blood pressure, cholesterol and diabetes. Available for iPhone and Android smartphones.
Quit Smoking – Cold Turkey
Scored the highest in a comparison between 47 US-based apps targeting the difficult task of quitting smoking.
Links to your heart
Online resources to keep you healthy.
www.escardio.org
Patient information by the European Society of Cardiology.
www.hearthub.org
The American Heart Association’s patient portal for information, tools and resources about cardiovascular disease.
www.world-heart-federation.org
An NGO committed to leading the global fight against heart disease.
www.heartfailurematters.org
Understanding heart failure online.
www.guch.org.uk
Supporting people with congenital heart disease.
Myra Tilney is a consultant doctor and senior lecturer at the University of Malta.