Kidney Disease: Improving Global Outcomes (KDIGO) is an independent global not-for-profit organization with a mission to develop, disseminate and implement evidence based clinical practice guidelines. Many guidelines are produced by physician societies, accountable to its members. But, KDIGO is uniquely not a society and has no members. It is accountable only to patients and the public, making KDIGO critically interested in the opinions and view of patients and patient groups from all parts of the world.
KDIGO and AAKP have formed an alliance to facilitate two-way communication with patients in the United States. This is similar to relationships KDIGO has with organizations elsewhere, such as CEAPIR, a federation of patient groups in Europe. Hearing from patients, soliciting their opinions before plans are made, and seeking feedback on its work keeps KDIGO in touch with patients and able to include them in its activities.
AAKP has begun providing input to KDIGO. Recently the organization reviewed KDIGO’s prospective list of future guideline topics and provided insights on their importance to patients. It also suggested some additional topics. This information was provided to KDIGO’s volunteer and staff leadership and will be taken into account as future plans are considered.
KDIGO has published nine guidelines to date with a tenth nearing completion and two updates of previous guidelines underway. It also has held 17 Controversies Conferences that bring
together 60 to 80 recognized experts to spend three days debating what we know about various aspects of kidney disease, what we can now do with what we know, and what we still don’t know. These guidelines and complete conference reports have been published in Kidney International, the peer reviewed journal of the International Society of Nephrology.
At a recent Controversies Conference on Autosomal Dominant Polycystic Kidney Disease (ADPKD), KDIGO entered a new phase of patient involvement. These conferences usually have four to five breakout groups that debate specific aspects of the topic and write recommendations. These recommendations are then presented to the entire group and debated and ultimately published as the final conclusions of the conference. At the ADPKD Conference in Edinburgh, Scotland in January of 2014, one of the breakout groups was made up entirely of patients. This breakout group was fully integrated into the process of the conference and its conclusions will be published in the conference reports.
The physicians in attendance reported great enthusiasm for this approach. They thought KDIGO was right to provide a forum for collaboration between them and their patients. They posed questions to the patient group and responded to their ideas and needs in ways that some thought were unprecedented.
ADPKD is particularly suited to such an approach since many of the consequences its patients face are not expressed through lab tests or clinical observations. Pain, disfigurement, growth and socialization are important to proper treatment but only if they are reported by patients themselves and taken into account by their treatment team. This is true of other types of kidney disease and is a pattern KDIGO will repeat in future Conferences.
AAKP is the perfect vehicle for KDIGO to interact with and learn from American patients. This is made easy by a long time friendship between Gary Green and John Davis, the staff leaders of each organization. From now on KDIGO will send AAKP plans, documents, guidelines and ideas for their consideration before they are finalized. KDIGO also hopes to work with AAKP as it implements guidelines and conference recommendations in the United States.
KDIGO has several simple basic messages: science is global, implementation is local; KDIGO assists clinicians and patients as they make individual treatment decisions; those decisions should be based on the latest scientific knowledge seen in light of real life circumstances that impact medical care and that patients are not lab tests. They are people who have treatable conditions who should be empowered to participate in their care.
A partnership between KDIGO and AAKP will help both organizations pursue their missions and improve outcomes for the patient constituents they both serve.