We hope you love coming to this site, where we try to cover all sorts of coagulation issues in a chatty friendly way (hence our name, Coagulation Conversation). It can be helpful to visit other sites too, but there are so many health related websites available that it can be hard to know where to start.
We’ve chosen five sites you may like, but would love to hear which others you use. Maybe we could do a reader’s recommendations post with your ideas. We’ve chosen two well regarded general medical sites, two that are specific to coagulation issues and one that is run by an individual who had a pulmonary embolus. Information about each site has been taken from the site itself.
NAME: webMD, http://www.webmd.com/ a major general medical information site from the US
RUN BY: a massive health corporation which is the leading health publisher in the United States, has over 1,000 employees and works with a team of over 100 doctors and health experts. The website is just part of their wider health network.
AIM: “We are committed to providing information on a wide variety of health topics, and rather than filtering certain types of information that may or may not be applicable to any one individual’s personal health, we rely on you, our reader, to choose the information that is most appropriate for you.”
ABOUT THE SITE:
- The site is absolutely up-to- date with multiple new posts a day. If you subscribe, you’ll get daily emails.
- It’s been going a long while, they’ve been winning awards for the site since at least 2008.
- 206 million users per month
- the site is funded by advertisers, including major drug companies and sponsorship.
- A to Z of health conditions – under D in health A to Z (not under D in ‘common topics’) is Deep Vein Thrombosis which leads to sections called ‘overview, symptoms, causes, complications, treatment and prevention’ and related topics, ‘anticoagulants, atrial fibrillation, pulmonary embolism and vascular disease’
- Drugs and supplements – with an A to Z search feature
- Symptom checker -enter your age, sex and symptoms to find out what could be wrong.
There are important medical disclaimers attached.
- Living healthy section
- News and feature stories – “based on our editors selections of the most important and relevant health events occurring on a given day. It includes latest information from the most important medical journals, announcements from federal health agencies, and analyses on the latest health trends.”
Good a slick commercial site that’s a very easy read with lots of images. Entertainment as well as hard-core information.
Bad There is a lot of information available and it may take a while to find what you need, even though the search functions are very easy to use. Some of the information is more on the ‘popular medicine’ end of the spectrum rather than the ‘peer-reviewed journal’ end and it’s not always easy to be sure which is which. The site accepts drug company advertising and even though they say their journalists and advertising staff work independently of each other, there’s always a concern that they may be biased towards advertisers’ drugs.
Best for when you just want to sit down with a cup of tea and enjoy browsing.
NAME: Patient, http://patient.info/ a major general medical information site from the UK
RUN BY: Patient was started in 1997 by two English doctors and is now run by Egton Medical Information Systems who “supply general practice computing systems and have a special interest and experience in making electronic systems that allow doctors and patients to find appropriate medical information quickly.”
AIM: to be “the web’s leading independent health platform trusted source of information for both patients and health professionals across the globe.”
ABOUT THE SITE
- Daily updates
- Nearly 20 years old
- 18 million visitors per month
- “receives no funding from external sources, for example drug companies”
- ‘click thru’ advertising banners (like we have on Coagulation Conversation)
- The landing page of the site is a big search form, where you can do a general search or search by letter, symptoms or category.
- Sarah Says – blogs and videos from Dr Sarah Jarvis who often appears on UK TV.
- Wellbeing – with sections on fitness, health and recipes
- Professional Reference – a direct link to the other half of the site, a very well-regarded source of medical articles written by health professionals for professionals and medical students. These articles would be accessible to many patients willing to spend a bit of time and energy to understand them.
- Forum discussions
- Health information – Deep Vein Thrombosis is immediately available under D (as you might expect!) This leads to 10 DVT articles, including “How common is a DVT?” and “Is a DVT serious?”
Good: Perhaps a rather biased review, as Angela has a particular fondness for this site. Maybe it’s because she’s English and used the professional part of the site a lot for revision for a recent professional exam. Anyway, it’s her go-to recommendation for family members needing information on health conditions. There is just the right amount of information, it’s all medically accurate and its fairly easy to understand.
Bad: It’s not quite so full of images and entertaining articles as webMD, although it does seem to be trying to emulate it.
Best for: those who want solid reliable medical information and are happy to concentrate for a while.
NAME: Stop the clot, https://www.stoptheclot.org/ a medical site focused on coagulation from the US
RUN BY: The National Blood Clot Alliance (NBCA), a patient-led, voluntary health advocacy organization. NBCA’s founding members were patients and medical professionals attending a thrombosis and thrombophilia workshop in 2003.
- to advocate for – and to educate and support — those affected by clotting disorders.
- to advance the prevention, early diagnosis and successful treatment of life-threatening blood clots such as deep vein thrombosis, pulmonary embolism, and clot-provoked stroke.
ABOUT THE SITE: long-running (13 years)
- up-to- date, with a few posts each month
- no adverts
- sponsorship includes some major drug companies.
About clots – Includes
- 4 general sections on blood clot risks, signs and symptoms, prevention and treatment
- Women and blood clots – a woman’s health awareness initiative
- Info on PE, DVT, AF and clot related stroke
- Info on individual risk factors – hospitalisation, cancer, travel, thrombophilia
- special sections on athletes and children
- FAQ page
- Patient stories – Over 70 people have told their own stories of having a clot.
- Two other sections, ‘get involved’ and ‘find a doctor’ could be useful to US readers
- There is also a section for health professionals
Good: The site has loads of information (for example there are 100 FAQs) and the information is sound. With over 15 pages of patient stories, there is bound to be something for everyone to relate to.
Bad: The site is rather text heavy and the patient stories do not seem to have undergone much editing, so can be quite long.
Best for: those who enjoy reading, who could spend hours on the site browsing information.
NAME: Thrombosis Adviser https://www.thrombosisadviser.com/en/ a resource for physicians (although at the bottom of the page it also says ‘and patients’)
RUN BY: Bayer- a major drug company, in collaboration with a board of advisers, comprised of recognised experts in the field of thrombosis. Three are professors of medicine, the fourth a professor of surgery
AIM: ‘provide up-to- date information for physicians and patients on thromboembolic diseases. Access the latest and most updated scientific content issued from prestigious peer-reviewed journals.’
ABOUT THE SITE:
- run by Bayer- a major drug company
- No adverts on the site
- VTE prevention
- VTE Treatment
- Atrial Fibrillation
- Acute Coronary Syndrome
Good – Lots of in-depth information, this is the type of site your doctor may use. It has some great basic science on it, including the coagulation cascade.
Bad – Bayer say ‘information on this website is purely for the purpose of presenting Bayer Pharma and its products and services’ which makes you think it may be rather biased to their anticoagulant, Xarelto. However, it does not seem to be biased, probably because of the professional advisors. It’s a very text heavy site, the few images and videos are of blood clots or professional advisors. As you’d expect, there’s a lot of medical jargon.
Best for – those ready for heavy-duty medical information, who have a scientific bent, a good knowledge of medical terms and time to spare.
NAME: Blood Clot Recovery http://bloodclotrecovery.net/ a US site run by an individual – Sara, a survivor of pulmonary embolus
RUN BY: Blood Clot Recovery Network (BCRN), founded by Sara
- create a community where survivors, recovering victims, families, friends, loved ones and advocates can come together to find encouragement, empowerment, enrichment and education to aid in the fight against the occurrence and devastating effects of blood clots
- Educate others about the signs, symptoms, risk facts, dangers and effects of blood clots,
- Encourage others to continue questioning, recovering, learning and living
- Enrich the lives of others by creating a safe environment where we can discuss, share and communicate to help each other as we move through recovery.
- Empower others to not only understand what happened to themselves, their loved ones or their friends, but to serve as health advocates in their communities and to raise awareness about blood clots.
ABOUT THE SITE:
- founded by Sara in 2013
- no adverts
- no mention of sponsorship
- regularly updated – two to three posts a month on the site, more on Facebook
- Sarah’s story- she suffered from a life-threatening DVT and PE that meant 6 days in intensive care, one month on oxygen, and two years of convalescence. Some of her lung tissue is permanently damaged
- About blood clots – signs and symptoms, risk factors, prevention, patient stories, what everyone should know
- About recovery – now what, first follow-up, how long to recover, emotional and lifestyle recovery
Good -What’s special about this site is its focus on emotional issues, recovery and its feeling of community. Sara is very honest about her journey and feelings and it is inspirational to see what she has achieved. The Facebook page has been ‘liked’ by nearly 4000 people who share their stories and inspirational quotes.
Bad– If you are the worrying type, you may find Sara’s very dramatic story rather overwhelming. It is an important story, but not typical of most people who have a blood clot. The site has limited (but solid) medical information which Sara says are her personal views, rather than those of a doctor or medical institution.
Best for– those most interested in how others cope with life after a clot and the reassurance they can offer each other.
I have a site on Facebook called Surviving a Silent Killer which is a survivor support group. I started it due to not enough reliable resources on the Web. I actually met Sara, admin and owner of Blood Clot Recovery Network and Linda, owner and admin of PEAP on Facebook. My site exists through their love and support of me after being diagnosed with clots. This is very nice you mentioned her here..she deserves it! The National Blood Clot Alliance ,of course, is awesome as well 🙂 I don’t trust very many sites but the ones you mentioned…perfect! Thank you!
thanks Lisa, what lovely feedback. We know about the value of support groups for living with our kids who have Down syndrome. Often professionals cannot supply all the nitty-gritty information that really makes a difference. It is interesting with Paul now having both professional and personal knowledge of pulmonary embolism. He certainly appreciates side-effects of medication now in a way he didn’t just as a health professional!