The series comprises educational and discursive webinars held on a variety of related topics, with the additional aims to share best practice examples and inspire open dialogue between multidisciplinary team members and their patients.
Here you will find discussion summaries and expert speaker podcasts from the series, as well as a special film developed in collaboration with PHA Europe on the value of peer-to-peer mentoring.
We encourage the resources to be shared with healthcare professionals and patient group representatives that may benefit from learning more about these topics.
Patient groups are only set up to support the over 30s
Danijela Pešić, founder and president of PHA Serbia, discusses how patient groups can unlock the ‘fighting’ spirit of and engage young people living with PH in their activities
Mental health in PH: not our responsibility?
David Gilbert presents his personal experiences of living with mental health issues, as well as his professional reflections on managing mental health within a clinical setting
Peer-to-peer mentoring is equally valuable as physician advice
Gerry Fischer, Hans-Dieter Kulla and Hall Skåra from PHA Europe discuss the importance of peer-to-peer mentoring and how patient groups can take an active role in organising and facilitating mentoring for members
Intimacy and PH
Nurse practitioner Wendy Hill discusses the critical issues of intimacy, pregnancy and contraception in relation to pulmonary arterial hypertension (PH) patients
Beyond the Basics: a PAH nurse-patient communications initiative
Martha Kingman, a nurse practitioner in the PH clinic at UT Southwestern Medical Centre, shares an overview of the Beyond the Basics training program, which aims to improve communication between people living with PH and their holistic healthcare team
Should we "dumb down" our language for PH patients? Exploring health literacy in practice
Kristine Sorensen, founding director of the Global Health Literacy Academy in Denmark, provides an overview of health literacy; addressing why it is important and the challenges in its implementation
What is motivational interviewing and how can it be used in brief consultations with PH patients?
Damian Edwards, Senior Cognitive Behavioral Trainer, introduces the concept of motivational interviewing and discusses a number of techniques that can be applied in consultations with PH patients
Danijela was diagnosed with pulmonary hypertension as an infant over 39 years ago. She is the founder and CEO of PH Serbia and is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. With Danijela’s inspirational leadership, PH Serbia has reached tens of thousands of people through its engaging social media and local celebrity-endorsed campaigns.
David is a former mental health service user and has 25 years’ of experience working with and for patients. He currently works as Patient Director for The Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. He has worked with over a hundred organizations to help develop effective ways that patients can be true partners in health and healthcare. David set up the consultancy InHealth Associates seven years ago, to provide strategic advice and support for health and social care organisations.
Wendy Hill is a PH nurse specialist at Cedar-Sinai Medical Group in California, US, who has been working in the field of PH for 20 years. She has managed and coordinated over 35 PH research studies, recently focusing on the study ‘Intimacy, Contraception, and Pregnancy Prevention in Patients with Pulmonary Arterial Hypertension: Are We Counseling Our Patients?’. The study delves into the risks of pregnancy in PH patients, methods of contraception, issues of intimacy, and what level of counselling is appropriate from healthcare teams. To read the full paper please visit http://journals.sagepub.com/doi/pdf/10.1177/2045894018785259
Martha is a family nurse practitioner in the PH clinic at UT Southwestern Medical Center, US. Her clinical work focuses on the follow-up outpatient care of PH patients. Martha is presently serving as sub-investigator in numerous ongoing PH clinical trials and serves on several PH advisory boards and steering committees. Since June 2017, Martha has been involved in the Beyond the Basics program, which involves educational workshops, in which PH nurses and social workers discuss how to enhance care through improved nurse-patient communication.
Kristine is a thought leader committed to advancing the global scale and scope of health literacy to improve health and quality of life for all. With a background in medicine, public health and global health diplomacy, her primary focus now is to improve health literacy in Europe and put it on the global agenda. Kristine is the founding director of the Global Health Literacy Academy and a leading figure for Health Literacy Europe - a network for advancing European health literacy.
Damian is an internationally respected expert speaker on the topic of human behavior and psychology. Damian now provides specialist training for clinical staff across Europe, applying Cognitive Behavioral Therapy to help with stress and pain management, overcoming addiction, patient adherence, the psychology of maladaptive behavior, weight management, smoking cessation and self-management of chronic conditions.