Talk to me: Empowering patients to speak up

Introduction to article as published in Touchpoint, the Journal of Service Design Volume 6 No. 2 (Better Outcomes by Design) by Service Design Network. Today, patients have more information than ever before about their conditions and treatment options. Think about the wealth of data in the online PatientsLikeMe community, where more than 220,000 patients share their stories about over 2,000 conditions and, which has 16 million visits each month.
Patient empowerment is one of the main trends in today’s digitalized health care landscape. People with a chronic condition are increasingly taking active control of their health, sharing information about treatments and finding great support in their interaction with fellow patients.
But while large numbers of patients connect with distant fellow sufferers through online communities, they often have a harder time communicating about their disease in their immediate environment: with family, friends, neighbors or colleagues. Those close to them seem to not always understand them as well as fellow patients do, at times leaving them feeling powerless rather than empowered. The problem is that many symptoms – such as fatigue and depression – and their impact are hard to explain.

Patients struggle to communicate these less tangible problems to the people closest to them, causing physical and emotional distress. Living with a chronic illness, for example rheumatoid arthritis (RA), can take its toll on a patient’s wellbeing and personal relationships. To overcome communication challenges in relation to these ‘significant others’ and to avoid social isolation, InSites Consulting and UCB, a biopharmaceutical company focused on chronic diseases, created a Consumer Consulting Board (also known as an online research community) for patients diagnosed with a chronic condition. The goal was to identify opportunities for patient solutions that help them improve their ability to communicate about their illness to their loved ones and to others whom they socialize with.

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