As the old saying goes, perception is everything. How we interact with and perceive the world around us so often fuels the lenses through which we gather knowledge. This process can lead to biased views and an incomplete understanding of the very subjects we seek to comprehend. Yet at the same time, our experiences have value, and the things we learn from them can lead us to connect with others in truly profound ways.
You may wonder what any of this has to do with patient-centered care and open access in health sciences research. Quite simply, the answer is a personal one. My journey to medical librarianship is one that has significantly influenced how I view these issues, because I haven’t always been a librarian.
For ten years I worked in numerous settings as a registered nurse. Six and a half of them were served in the U.S. Navy Nurse Corps. The adage is true: join the Navy, see the world. On numerous occasions I was forced to step outside of myself to truly care for others, and in a variety of places where belief systems and ways of living were so completely different from my own.
From the devastation of earthquake-ridden Haiti to remote towns up and down the Central and South American coasts, I saw firsthand that standards of care are not equal for all people. It is one thing to theoretically know that these disparities exist, and completely another to witness it personally. So many of the peoples we served lived in daily deprivation of resources that I had always taken for granted. Clean water for bathing and cooking, electricity, even soap for handwashing was never guaranteed. Yet even amidst such settings, the people I had the honor of meeting approached life with a determination that I will never forget. They taught me how to make the most out of every situation, and to appreciate the beauty that can be found in diversity of language, thought, customs, and more.
It was in these places and through these experiences where I truly learned to put the patient at the center of my professional practice. This is a well-known concept in most medical fields, but again, knowing in theory is very different from practicing in reality. We faced language barriers and cultural differences quite frequently, and it took a great deal of patience and grace on both sides to overcome them. In many ways the language barriers were almost a blessing, as it forced all of us to slow down and make sure we truly understood what was being said. Finding ways to communicate were often difficult, and even a bit comical at times, but it drew us closer to those we were caring for and forced us to set aside any assumptions we may have had. Pride had no place in these conversations, and I will always be grateful for these humbling and eye-opening experiences.
Through these encounters I realized how essential evidence-based medicine combined with a patient-centered approach can be. Many of the people we encountered were suffering from maladies and illnesses that could easily have been avoided if the communities and medical practitioners had access not only to supplies, but to current health sciences research. It is hard enough for many medical providers here in the U.S. to access the references and resources they need. Databases and journals put up pay walls to certain publications, and organizations may or may not pay the contracting fees necessary for their staff to use certain platforms. This makes access to relevant research extremely uneven, even for medical providers and facilities that are located within the same area.
The movement towards open access in the health sciences is certainly a valid response to this problem. Such a concept reinforces the idea that, for providers to truly give the best care they can for their patients, they need to be able to find the information that will help inform said care. Publications and databases that openly provide these resources promote and facilitate this ability. Yet even here there is room for improvement. Often the focus is on digital technology and platforms, but it is important to note that not everyone is able to utilize these products. As mentioned before, in my travels we encountered communities that did not even have working electricity. Open access does not mean equal access.
This is why a patient-centered approach is so necessary when it comes to open access considerations in the health sciences. It reminds us that, no matter how wonderful potential resources may be, they mean little to those who do not have the ability to use them. For open access as a movement to truly provide the most benefit to the most people, we need to restructure its practices so that these resources meet people where they are at. The only way to do this, and do it well, is to remember who we are trying to reach. Communication barriers need to be recognized, and cultural differences need to be respected when we consider the modes of delivery we are trying to implement. Just as I discovered when trying to communicate with patients whose languages and customs were different from my own, there is no place for pride or assumptions here.
There are no easy answers as we move forward in this journey towards a more open and accessible research environment. Solutions may be messy, imperfect, and ever-changing. But as long as we build on a foundation that values the needs and well-being of the people we are trying to serve; we will be moving in the right direction.