The Patient Engagement Resource Centre (PERC) has selected relevant public resources to help translational researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement: from planning to conducting and evaluating. The platform is addressed to researchers but it is also a practical tool for patients to access and […]
Eva Otter has been living with pulmonary hypertension for twenty years. She was diagnosed with pulmonary hypertension in 2003. At that time she was a busy medical laboratory manager in Lower Austria and also supported her boss at conferences, with publications etc.In this article Eva shares her patient journey over the past years, how she
Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of
The UK Pulmonary Hypertension Association (PHA UK) asked the community what they wanted to know about how artificial intelligence might affect diagnosis and management of pulmonary hypertension, and then put their questions to Dr Andy Swift, a Cardiothoracic Radiologist working with the Sheffield Pulmonary Vascular Disease Unit. Here is the link to the video
The “European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension” were published on the European Journal of Heart Failure on March16, 2023. The indicators may be used to quantify and improve adherence to guideline-recommended clinical practice and improve patient outcomes. Quoting Gergely Meszaros, pulmonary hypertension patient advocate
HTaPFrance held its 5th Pulmonary Hypertension Patient Conference from March 10-12, 2023, in Valpré-Lyon. The Conference, which takes place every 3 years, was delayed because of the pandemic, and all the participants were therefore delighted to be able to come together again. The strikes in France made it a bit more complicated for some speakers
A study titled “Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis” was recently published on Pulmonary Circulation. It was conducted on adults with pulmonary hypertension (n = 65) and caregivers (n = 29), who completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion,
Commentary by Pisana Ferrari There is a huge amount of hype at the present moment around “ChatGPT”, a natural language processing model developed by OpenAI. ChatGPT interacts in a conversational way and replies to questions from users by tapping into the gigantic amounts of data, vocabulary and information that has been “fed” into it by
Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance
In the abstract to this very interesting article titled “What’s the Role of Time in Shared Decision Making?”, the authors point out that while shared decision making (SDM) is a desirable process and outcome of patient-clinician relationships, time is often insufficient and represents a barrier to SDM. The authors explore alternative ways clinicians can think
“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics Read Post »
Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS (European Organisation for Rare Diseases) Black Pearl Awards celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals,
The authors of a study titled “Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare” presents an integrated model to strengthen and sustain patient engagement in health care by drawing on the strengths of both concepts. This includes addressing patients’ skills and capacities, they say, alongside modifications to written
phaware® creates PH awareness and global engagement on behalf of families, caregivers and medical professionals and supports innovative pulmonary hypertension research efforts to find a cure for this deadly disease. Address: 1227 N. AVON ST., BURBANK, CA, 91505818.395.3529 Email: INFO@PHAWARE.GLOBAL
phaware global association Read Post »
A very useful tool to understand “PH-speak” developed by the Pulmonary Hypertension Association (PHA) The PHA Acronym decoder can be found on the dedicated PHA Website at this link
Pulmonary Hypertension (PHA) Acronym Decoder Read Post »
This glossary appears in Pulmonary Hypertension: A Patient’s Survival Guide. It was modified for the web to include links and additional references. The Glossary can be searched on the dedicated page on the PHA Website at this link
The European Medicine’s Agency (EMA) medical terms simplifier contains plain-language descriptions of medical terms commonly used in information about medicines. This resource is continually reviewed and updated internally, and the EMA publishes updates periodically. Check the EMA medical terms simplifier at this link
European Medicine’s Agency (EMA) medical terms simplifier Read Post »
This research award grants up to $65,000 for one year and supports junior pulmonary hypertension scientists. Proposals must be pulmonary hypertension related research projects that have been favourably reviewed for a National Institutes of Health Early Career Award (K award) but not funded. The award provides bridge funding so the project can generate sufficient preliminary
EURORDIS, the European Rare Disease Organisation, has published a short guide to explain in simple and practical terms how to involve patients and patient representatives in the development of clinical practice guidelines and consensus statements. You may download the guide from the EURORDIS website at this link
The Pulmonary Hypertension Association (PHA) offers education programs for patients and caregivers through online learning, regional forums and conferences. See the dedicated page on the PHA website at this link
