IOM Excludes Patients from Agenda of Upcoming Workshop on Birth Settings
By Jill Arnold
In September 2012, I contacted two people, an IOM staff member and a care provider working in an academic capacity, listed as planning committee members on the IOM web site for the March 2013 workshop on birth settings to strongly recommend the inclusion of patients on the agenda.
I received this reply:
At this time, the committee is working with staff to craft the agenda. They are identifying speakers and forming panels. As you mentioned in your email, there are lots of stakeholders who are interested in this workshop, and our goal is to provide presentations covering research on birth settings in a neutral and informative way to reach all audiences. We know that there are some research gaps in this field, and those gaps will certainly be discussed at the workshop. The agenda will be structured in a way to allow for Q&A after each panel, so we hope that you will be able to attend the workshop and participate in those Q&A sessions. Please understand that no recommendations will come from this workshop or the committee. The workshop is a venue to highlight research issues in the assessment of birth settings.
On January 7, 2013, I noticed that the agenda was posted and registration open. The agenda included no patients. I e-mailed the planning committee and some of the participants and the following is an excerpt:
I contacted [name omitted] and [name omitted] last September regarding the importance of including the consumer voice at the Research Issues in the Assessment of Birth Settings workshop in March. Unless I am mistaken, the posted agenda is made up entirely of care providers, academics and professionals with not one layperson representing childbearing women. This is pretty disappointing, especially in light of IOM’s commitment to a patient-centered direction for healthcare. Simply opening up a meeting to the public and “allowing” consumers to participate in a Q&A does not make it a multi-stakeholder meeting. I strongly encourage you to get at least one woman on the agenda representing the patient perspective with regards to birth settings.
There are many names of consumers/patients from diverse backgrounds that I could recommend to speak about their experiences and give solid recommendations for research needs in the area of birth settings. [Name omitted] indicated in her reply in October that the agenda was not finalized but that the public could use Q&A time to be heard. There are many patients (real patients, not paid patient advocates with an organizational or professional agenda) who can speak in a neutral, non-inflammatory manner. Including them in the agenda is critical to showing that all stakeholders' input is valued. In my opinion, failure to include patients formally and the open mic format is what leads to contention, anger and that feeding frenzy energy at these type of public workshops and summits.
The reply I received from IOM:
It is important to note there was a committee appointed to design the agenda for the workshop within the confines of the statement of task, to which the institution is contractually bound. Therefore, the planning committee selected the topics and speakers that best fit the statement of task at hand. Consumer advocacy is not part of the statement of task under the contract. Nonetheless, by including a provider panel that represents services in all settings, the committee hoped to bring all perspectives into the discussion. As always, the IOM workshop is open to the public and comments are welcome.
1. A provider panel was included to bring all perspectives into the discussion.
2. The microphones will be there for public [read: patient] comment.
3. There are consumer advocates on the agenda. The problem is that there are no patients.
The IOM missed the opportunity to make this a multi-stakeholder workshop in which actual patients could speak about research needs. Instead, IOM staff and planning committee members decided to stick with the top-heavy approach that has fallen by the wayside in many other areas of medicine.
The workshop on birth settings is ironically preceded by the follow meeting: