The role of the patient community in developing meaningful solutions
Today is World PH Day! Marked every year on 5th May, it provides a global platform to raise awareness of pulmonary hypertension (PH), champion people living with PH and support improvements in care.
The importance of putting patients at the heart of solutions
As a patient myself, I know that understanding all aspects of treatment and care, and gaining greater control over decisions affecting your health, can be hugely beneficial to people living with a disease. It is equally important that everyone involved in developing healthcare solutions designed to support patients with day-to-day management understands patient needs and lifestyle, so the solutions will have the highest health impact. Through my work in other diseases such as HIV, I have seen that early and systematic input from people living with the disease can speed up the development of solutions and treatments.
At Janssen, we are exploring and identifying innovative ways of putting patients at the heart of solutions development. I strongly believe the future of healthcare will be value-based – if you’re interested, my colleague Dr Catherine Taylor, Vice President of EMEA Medical Affairs, Therapy Area Strategy, has written an insightful piece on innovation across the healthcare system and the ultimate value of our solutions is the value they bring to people living with a disease. Close collaboration and co-creation with the patient community can lead to better health outcomes, helping them thrive. This also supports other stakeholders such as healthcare professionals, carers, and pharmaceutical companies, and in turn makes healthcare systems themselves more sustainable. Sustained engagement with patients and advocacy groups is vital to create innovative and meaningful resources for people living with conditions like PH.
Why is World PH Day important?
A central mission of World PH Day is ‘to raise awareness of this frequently misdiagnosed disease and celebrate the lives of people living with PH’. At Janssen, our focus is on a serious, rare form of PH, pulmonary arterial hypertension (PAH), the symptoms of which can be similar to conditions like asthma and chronic obstructive pulmonary disease. This makes accurate diagnosis challenging – it can take an average of two years, and in some case up to four years, for a person living with PAH to receive a diagnosis, over which time the disease may have progressed significantly.
This highlights the importance of early diagnosis of PH, to allow people living with this progressive condition to access the care and treatment they need as early as possible. World PH Day provides an opportunity to shine a spotlight on people living with PH, to increase awareness of the condition and thus improving diagnosis. As part of this, patient insights and engagement are crucial, to understand the challenges patients face throughout their diagnosis and treatment journey, supporting earlier detection and intervention and enabling them to gain greater control over their PAH treatment and care.
Supporting PAH education and remote monitoring through tailored solutions
We are united with the patient community in the mission to improve and facilitate earlier diagnosis and empower patients and so continue to partner with people living with PAH to develop a range of resources to support them in managing their condition. In co-developing resources and learning from the experiences of people living with PH, we are seeking to champion their evolving needs and to support their entire PH journey. In rare diseases such as PAH, this is particularly important, as specialised disease information and support for patients is often lacking. Research suggests that informed patients are better equipped to make educated decisions on their treatment pathway and can therefore experience improved outcomes.[3,4]
Our PH Human programme exemplifies this approach to solutions development, with multifaceted resources for those who wish to better engage with their PAH care:
- Our PAH Patient Charter, created in collaboration with patients, advocacy groups, and healthcare professionals, sets out what patients should expect from their PAH care at every stage of their disease journey. The Charter provides people living with PAH with experience-based guidance to support shared decision making, and recommendations to drive improvements in PAH care pathways.
- Our PH Human app, which we are continuing to launch in countries throughout the EMEA region, allows people with PAH to monitor their wellbeing, vitals, and PAH symptoms on a daily basis and engage in personalised diseases education and care programmes. Furthermore, app users have the option to provide their healthcare professionals with access to detailed information on their condition to foster greater connections between them and their healthcare team.
Hearing the stories of other people that have found a way to live well with PAH can be both reassuring and inspiring; our PH Human website shares a range of experiences from people living with PAH. Our Breathe In, Speak Out patient empowerment campaign seeks to help people living with PAH build their confidence to have informed conversations with their healthcare team and wider support networks about their wellbeing, PAH journey and management. The Conversation Kit is available on the PH Human website for patients to download and reflect on when engaging in conversations about their condition.
At Janssen, we are committed to transforming how cardiopulmonary diseases are intercepted, diagnosed and treated so that patients can live a full life. Empowering patients who wish to take an active role in their care is a crucial part of this aim and I am proud of the resources we have created and encourage you to explore them and share them throughout the PH community.
Our ambition is bold, but as with any condition, the expertise of people living with it is vital to making meaningful progress.
1. Prins KW, et al. Cardiol Clin. 2016; 34(3):363-74.
2. Armstrong I, et al. BMC Pulm Med. 2019; 19:67.
3. World Health Organization. 2016. Available at: https://apps.who.int/iris/bitstream/handle/10665/252269/9789241511629-eng.pdf Last accessed: April 2022.
4. Doyle C, et al. BMJ Open. 2013;3:e001570.