Patients Wouldn't Like This ... Would They?

tyler_blogTyler Ludlow, a decision scientist at Lilly, has a real passion for helping people make better decisions, including helping to relieve the burden that comes when facing medical decisions. He attended MedX with us back in September and subsequently learned first-hand the value of co-creating with patients during a summit on shared decision making. We welcome Tyler as today's guest blogger. 

I’m a decision scientist. Yes, that’s an actual job. I get paid to help people make better decisions. Lilly has used the discipline of decision sciences for over 25 years to make big and complex organizational decisions. In recent years, we’ve realized the value in using this discipline to support and enable better medical treatment decision-making by patients and their health care providers. In order to truly accomplish that, Lilly recognized the need to partner across health care, and hence helped sponsor the first Shared Decision Making Summit.

The SDM Summit was hosted by the Society for Decision Professionals, in partnership with the Society for Medical Decision Making. This was not a standard conference where attendees sought ideas about how to do Shared Decision Making (SDM) better, but rather more of a working meeting among health care leaders to discuss practical ways to make collective, systemic and structural changes that enable SDM.

As a leader of the steering committee, I was asked early on if we were going to invite patients to the summit. While SDM is, by definition, about making decisions in partnership with patients, the summit was going to focus on discussing policies, regulations, organizational structures and the like. I assumed that this type of meeting would likely not be very attractive to patients. I figured that having leaders from patient advocacy organizations participate was a more appropriate solution. The steering committee agreed.

As we were pulling together the summit agenda, one potential presenter expressed interest in the summit but added that he would not attend if the event did not meet the Patients Included guidelines. The steering committee members hadn’t heard of these guidelines, which are based on the simple yet powerful premise that we shouldn’t have meetings to talk about patients without patients being involved. While we liked the idea of the guidelines, we had previously decided against inviting patients and didn’t have the budget to cover their travel and accommodation expenses. We had made that original choice with the best of intentions. However, the simple and bold stance of Patients Included changed my view. Maybe we should let patients decide!

With this new viewpoint, I quickly put together a proposal to invite and provide scholarships for patients to attend the summit. The proposal was unanimously approved by the steering committee. We identified a few potential patient participants and sent off an invitation with admittedly short notice, so I didn’t know what to expect in terms of their response. But just five minutes after sending the email, I got a phone call and then two email responses, and in a matter of hours, all three had accepted my invitation and were working out travel plans. I had been wrong about how interested patients might be in participating in the SDM Summit!

Having patients join the conversation was hands-down one of the best parts of the event. They shared stories about their journeys, which was very grounding. But even more valuable were their significant contributions to the discussion and ideation. The expertise that they brought was their experience. They helped the group pause, re-think and problem solve. While their personal journeys as patients were moving and powerful, their contributions provided so much more than just a compelling story.

This experience caused me to reflect, and I’ve made a few conclusions. First, it is a no-brainer to include patients on the steering committee for planning future summits. Second, we obviously need to invite patients to join the stakeholder group that is leading a project focused on applying SDM to discussions of clinical trial enrollment. Finally, as we formalize plans for SDM projects in 2017 and beyond, I’ve concluded that it is best to invite patients as full partners and let them decide when not to be involved. This will be an important step toward collaborative problem-solving and hopefully will lead to the development of solutions and tools that meet all of our needs.