Words by Isabel O’Brien
Loneliness will impact each of us throughout our lifetimes, for both fleeting and more lingering durations. Whilst you may feel lonely when your dinner party guests depart to their respective houses, or in a room full of strangers that all seem to share a connection, for most, this feeling is temporary and you still feel aligned with the world you are a part of.
The sense of belonging can be compromised for people affected by chronic illness: a daily barrier to how other people are conducting and experiencing their lives. Considering that loneliness can evolve into a health issue in its own right – said to be more dangerous than obesity and the equivalent of smoking 15 cigarettes a day – it is important for the healthcare industry to look up and take notice.
“Patients frequently feel that others are unsympathetic to, or uncomfortable with, their disease, leading many to withdraw and limit their contact with friends and loved ones,” explains Marina Ness, Director of Research, Inspire – a healthcare social network.
Expressing sympathy and understanding can be difficult for those closest to the patient, with intentions to empathise mitigated by the fact they are not experiencing the disease themselves. It is therefore important that the healthcare industry creates spaces for patients to find kinship and plays a role in educating friends, family, and the wider public about health conditions.
Previously, this responsibility would have fallen to local healthcare providers; however, the rise in patients accessing information online has split and spread these tasks to other strands of the healthcare sector.
Patient advocacy groups, health agencies, clinical research organisations, and the pharmaceutical industry can now foster patient kinship by partnering and funding healthcare social networks, such as Inspire, which houses thousands of forums for both common and rare diseases. These virtual communities allow patients to exchange information and support, and for pharma, they grant access to critical patient insights and a bank of potential clinical trial candidates.
“In partnering with Inspire, life science companies are joining our mission to accelerate medical progress through engaged and connected patients,” says Ness.
The industry can also positively impact patients by collaborating on disease awareness campaigns, which can spark dialogues and bust myths surrounding chronic illness. The campaign #IAmNumberSeventeen, initiated and funded by Takeda, in alliance with a multitude of patient organisations, is emblematic of this dual objective. Not only did it give voice to 17 different rare diseases, but also highlighted that 1 in 17 people in the UK will receive a rare disease diagnosis. Campaigns that both inform and de-stigmatise will need to grow in the coming years, given the psychological benefit of patients feeling that they are part of the public dialogue and are being heard.
“We need to start to see ‘information as a therapy’ in its own right,” says Mark Duman, Chief Patient Officer, MD Healthcare Consultants. “All disease awareness campaigns and patient support programmes should include a call to action which asks ‘participants’ to reach out to others – in person, through social media, and through faith and community groups. Belonging makes us live longer.”
The day-to-day challenges of dealing with chronic disease can be varied, but feelings of loneliness and isolation are often universal. It is time for pharma to invest further in this common side-effect of long-term illness; the industry is well-positioned to ensure that every patient feels acknowledged and at one with the wider room.
All disease awareness campaigns and patient support programmes should include a call to action which asks ‘participants’ to reachout to others