It was 2006. We were sitting in a meeting room at UCB, where I work, and chatting with people living with severe diseases about the medical advances and communications tools that could potentially support their everyday lives. I was struck by three things. First, the generosity with which patients were willing to share their experiences in order to help others in the same situation. Second, their thirst for knowledge in order to make the most appropriate health choices for themselves and their families. And third, their wish to be connected across stakeholders.
Since this time, I have been privileged to hear the personal stories of many patients, families and caregivers. These personal experiences have been inspirational and offered me unique insights into living with diseases that can be life changing. My first impressions from that 2006 meeting have been re-enforced. From a communications perspective, I appreciate that the involvement and feedback of multiple stakeholders is essential in developing meaningful communications initiatives. Inspired by patient insights, this has been our approach for many years and has resulted in impactful tools that have been developed by patients for patients.
Walking the talk
It wasn’t always like this. Over 20 years ago, when I started my working life as a research scientist in academia and then in the biotechnology industry, I had little idea of what it was like to live day-to-day with the diseases for which I was researching new treatments. Communications tools and support for patients were not as plentiful as they are today. The tools that were available were often created without the valuable input of the audience for whom they were intended.
At that time some diseases carried a stigma that meant people were often unwilling to talk publicly or to share their personal experiences. Fortunately, this situation has changed and continues to evolve. Thanks to the courage of those who are prepared to share their experiences we have a new understanding of the unmet needs and how all stakeholders can provide more effective support.
As highlighted in the 2006 meeting, stakeholder collaboration and partnership is essential to advancing science and to raising standards of care for all. We are all partners in communication and together our actions and voices are stronger than alone. Through social media, we now have new ways to interact and to learn from each other and I am excited about these fresh opportunities for collaboration and connectivity.
Those same principles of partnership and collaboration are just as essential for ensuring that we can all make informed choices about our personal well-being regardless of who we are, where we live, or the language we speak.
As we move forward, we look forward to learning about your health experiences, sharing your goals and working together for a healthier future.