Posted on December 15th 2021
A global study has named the PHA UK website the best quality PH association site in the world for information about pulmonary arterial hypertension.
Titled ‘Quality of online information on pulmonary arterial hypertension’, the study was led by researchers in Canada. It analysed 117 unique English-language websites about PAH, including those from healthcare providers, pharmaceutical companies, and other patient organisations.
www.phauk.org came out second overall, beating the NHS website, the USA’s Mayo Clinic website, Medical News Today, and more. It was the highest scoring website from a pulmonary hypertension association.
The study scored websites using two widely-used assessment tools. The JAMA benchmarks, which focus on transparency and lack of bias in online health information, are a series of four criteria established by the Journal of the American Medical Association.
And the DISCERN instrument analyses whether consumer information is reliable and trustworthy, providing users with a valid and reliable way of assessing the quality of written information on treatment choices.
The research was led by Canadian PH physicians Dr Dana Saleh and Dr Jason Weatherald, and the findings were presented at the 2020 European Respiratory Society conference. They have also recently been published in respected medical journal The Annals of the American Thoracic Society.
Dr Saleh, a Respirology Resident at the University of Calgary, said: “I was very impressed with how well the quality-of-life aspects were covered by the PHA UK website; for example the sections on intimacy and relationships, caregiver support, and extra resources being mailed to patients at no cost.
The other really strong aspect was the emphasis on shared decision-making, which was lacking on other websites. This includes encouraging patients to take an active role in managing their care, but also presenting them with accurate and evidence-based information that can be helpful when they are discussing their points or concerns with healthcare providers. The website scored really highly on these things.
I was very impressed with how comprehensive the website’s focus was on quality of life and all the non-medical aspects as well.”
Dr Weatherald, Assistant Professor at the Libin Cardiovascular Institute and University of Calgary in Canada, now directs his patients to www.phauk.org alongside the country’s own PH association website.
He said: “As I looked at all these websites, phauk.org really stood out as one of the most thorough and comprehensive among all societies. It scored very highly for both quality and content, with a nice balance of both elements – reliable, unbiased information, and thoroughness of information too.”
www.phauk.org has recently undergone a re-design, making it even easier to navigate the information and resources. It sits alongside the charity’s second website, www.phocusonlifestyle.org, to form a comprehensive online support offering for the PH community.
Carl Harries, Lead Clinical Nurse in the Royal Brompton Hospital’s PH service, said: “The PHA UK website is fully deserving of this recognition. It is a valuable, trusted source of information for our patients, and I regularly direct them to both that and their lifestyle website during my consultations. It has also been a vital source of trusted information and advice, for both patients and PH professionals, through the COVID-19 pandemic.”
Dr Iain Armstrong, Chair of the PHA UK, said: “It was a wonderful surprise to discover how well our website scored in this study, and it’s a reflection of all the hard work by the team to maintain such high standards.
“Access to accurate and reliable health information is vital in these times, and we are proud that we can offer this to both our own members and people affected by PH around the world.”
The team behind the study are now planning further research into online information about pulmonary hypertension.