NEJM Scholar: Third Last Entry

Since the essay is published on their website, I figure it's time for me to share it with you guys, too. I was a little sad to find my entry to be the third last, but anyway...I welcome your comments and critics.

The Well-Informed Patient

by Jun Yi Sim, Tzu Chi University

Posted on May 24th 2012

NEJM Scholar

The ease of communication has empowered millions in obtaining and distributing information. A major consequence of social networking is the devaluation of knowledge – what used to come in textbooks and newspapers can now be obtained free via the internet. However, whether they are reliable remains a matter of the user’s background and intelligence, especially so in cyberspace.

Sadly for the general public, real, solid medical information from reputable sources are expensive. For those unwilling to pay, reliability is compromised from one-sided commercials with profits in mind. Hence, providing essential research findings to a non-medical population free of charge is a growing need. An online portal with the spirit of social networking and real-time updates will fit the niche comfortably. It will provide the highlights of recent discoveries and recommendations at no costs, invite the public discussion, and solicit improvements from feedback. It will be something between Wikipedia and Facebook.

To ensure accountability and credibility, the portal should be moderated by a panel of medical, public health, and public representatives with peer reviewers. It should be a transparent and objective group with the aim of empowering patients to make decisions. In short, it serves as the online physician providing unbiased advice albeit with real-time updates accessible anywhere.

It will differ from co-existing NIH or government health policies in instant public feedback and interaction. The gap between research and clinical practice will be narrowed with individualized recommendations for exceptional cases. Patients can also advocate for policy or funding reforms under a unified portal. Most importantly, interaction allows the medical community to align itself with the public’s needs.

A major challenge would be publishing copyrighted materials at no charge. The argument for the portal would be publishing the essentials – statistically significant figures, adverse effects, survival rates, medical or surgical indications. Publishers will benefit in the long run when patients desperately in need of details purchase full articles. In the long run, it hopes to empower people, especially those from poorer regions, with sufficient information to make their own choices and participate in trials via international collaboration. With increased feedback, we aspire to balance the inequality via global cooperation and pooled resource management.

Information and copyrights will inevitably costs very little in future – just take a look at Youtube. As the spread of knowledge deregulates, it is vital for patients to get them from a trusted source. Doctors are doing that right now, but the quality is plagued by inconsistencies across regions, language, and workload. A fair peer-reviewed portal would serve as a good second opinion with pooled patients’ input for references. Further down the road we hope to get patients involved with their needs and curiosities. It would be a compromise for journal publishers, but not without a noble cause in line with worldly trends.

We believe a well-informed patient is easier to treat and we look forward to the day when we can discuss eye-to-eye with our well-informed patient.