Becoming an empowered patient and the importance of putting patients first
As every parent knows, the joy of having your first child comes with seismic life changes. It was while grappling with life as a new parent six years ago that I was diagnosed with type 1 diabetes and it took me a while to come terms with the news.
On top of the resentment, frustration and anger, there was now a long list of things I had to do to prevent my condition getting serious: carefully monitor my carbohydrate intake, inject myself with insulin many times a day, regularly test my blood glucose with finger-prick tests and learn to use a mobile monitor. Then this year, I became eligible to use a sensor-based glucose monitoring system and everything changed.
This fantastic innovation – a small implant in my arm that I can scan with my phone – generates a daily report of my blood glucose levels and even sets off an alarm if they become too high or low. With this implant, I am much more empowered to manage my condition.
Up to this point, I recognised and imagined how important patient empowerment was, but now I have experienced first-hand the impact it has when a patient becomes more confident taking ownership of their symptoms and decisions affecting their health – I have become an empowered patient.
Why am I writing about this now? This month marks pulmonary hypertension (PH) Awareness Month, a hugely valuable platform for raising awareness of this serious rare disease and spotlighting the stories of people living with PH. I want to take this opportunity to focus on the value of patient empowerment. While disease awareness is important, we need to go beyond this. We must help patients who wish to gain greater control over decisions impacting their health if we are to truly improve long-term patient outcomes.
At Janssen, our focus is on pulmonary arterial hypertension (PAH), a specific form of PH. I have written previously about the severity of PAH and the many unmet needs of its community. There is low awareness among both the medical community and at-risk populations1 and PAH is challenging to diagnose. Patients are often misdiagnosed and may see multiple physicians before their PAH is eventually confirmed, all while their symptoms continue to worsen.1,2 My colleague Jason has written about our work to raise awareness among key medical referrers, while our alPHa learning platform helps to educate healthcare professionals on PAH and support accurate, timely diagnosis.
Empowering patients: a process through which people gain greater control over decisions and actions affecting their health
Accurate and timely diagnosis is vitally important, but is only part of the picture. PAH is a complex disease with numerous challenges for patients. A recent Netherlands-based study found more than half of patients were in need of or considering professional support for their mental health or coping with PAH/PH.3 An international survey of PAH patients during the COVID-19 pandemic supported this, with 67% reporting anxiety or depression.4 Once diagnosed, patients must be empowered to communicate clearly about their PAH, to better understand their condition and to access the best possible care.
Beyond my own experience, the importance of patient empowerment is well-established. Patients are experts in their own wellbeing, and enabling individuals to express their needs, be involved in decision-making, and take action to meet those needs, can lead to better outcomes. Research suggests informed patients are better equipped to make co-decisions on their treatment pathway and therefore experience improved outcomes, both in terms of their disease and the emotional burdens they may carry.5,6
Due to the nature of rare diseases, access to specific information and tools to support patients can be limited. Organisations working to support rare disease patients must work directly with these communities to identify gaps and co-create solutions that provide better holistic support.
PH Human - led by patient experience
At Janssen, we are committed to partnering with patient communities to improve all aspects of patient care, ensuring patient insights are always at the heart of what we do. That’s why we’ve created our PH Human patient programme, designed to provide tailored support to those living with PAH, support active engagement in their care, and give back some level of control over their condition and management.
PH Human is part of JanssenWithMe, the next milestone of our patient engagement legacy in EMEA and Janssen’s premier digital platform dedicated to supporting patients and caregivers affected by the disease areas Janssen serves.
PH Human is comprised of a number of interconnected tools, campaigns and resources. The PH Human website is a dedicated platform encompassing all our patient education, support, and empowerment activities across EMEA. Created in partnership with the PH patient community, it offers real-life patient experiences and provides reliable information for PAH patients, their carers and loved ones.
I am particularly excited by the launch of our new PAH patient empowerment campaign: Breathe In, Speak Out. A key element of the campaign is the Conversation Kit, which seeks to help patients build their confidence in having informed conversations with their healthcare team about their wellbeing, PAH journey and management. The Conversation Kit is available on the PH Human website for patients to download and incorporate into their day-to-day life.
PH Human also contains a host of other resources, including:
Our PAH Patient Charter, created in collaboration with patients, advocacy groups, and healthcare professionals, which sets out what patients should expect from their PAH care.
Our PH Human app, which we are continuing to launch in countries throughout the EMEA region. The app allows people with PAH to monitor their wellbeing, vitals, and PAH symptoms on a daily basis, as well as the option to provide their healthcare professionals with access to detailed information on their condition.
I strongly encourage anyone involved in the care and treatment of people with PAH to explore our resources and see how they can help empower patients to take an active role in managing their condition.
Our bold ambition
It is our bold ambition to transform PAH into a long-term, manageable condition so that patients can live a normal life. This will only be achieved by keeping patients at the forefront of our work. My own empowerment in managing my diabetes has shown me how life-changing patient-centric initiatives can be.
At Janssen we are looking beyond investigating new therapies, aiming to improve all aspects of PAH care. Moments like PH Awareness Month are crucial opportunities to share patient experiences and I hope that through these moments, increased awareness, and improved treatments, I will see the day when our ambition is a reality.
1. Armstrong I, et al. The trajectory to diagnosis with pulmonary arterial hypertension: a qualitative study. BMJ Open 2012;2:e000806. doi: 10.1136/bmjopen-2011-000806.
2. Armstrong I, et al. The patient experience of pulmonary hypertension: a large cross-sectional study of UK patients. BMC Pulm Med 2019;19:67.
3. Muntingh A, et al. Pathways to experiencing mental problems and need for mental support in patients with pulmonary arterial hypertension. Pulm Circ. 2017;7(3):609-616.
4. Godinas L, et al. PH CARE COVID survey: an international patient survey on the care for pulmonary hypertension patients during the early phase of the COVID-19 pandemic. Orphanet J Rare Dis 2021;16:196.
5. World Health Organization. Patient Engagement: Technical Series on Safer Primary Care. 2016. Available at: https://apps.who.int/iris/bitstream/handle/10665/252269/9789241511629-eng.pdf Last accessed: October 2021.
6. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013;3:e001570.