Stepping Stones to a Cure

iConquerMSTM (iCMS) was established to enable and accelerate MS research and other innovations with the goal of improving the health, healthcare and quality of life of people affected by MS.  The initiative does this by connecting those with MS, care partners, clinicians, and researchers, and encouraging them to work together to accelerate innovation, research, and the application of new knowledge.  Through iCMS, people affected by the disease are driving new ways of conceiving, designing, conducting, and disseminating MS research that centers on their needs and results in significant improvements in their health and quality of life.

In November, the iCMS governance and other stakeholders in the MS community gathered virtually at the 2023 Leadership Summit to discuss the future direction of the initiative.  The key focus of this year’s meeting was building the pathway and identifying the stepping stones needed to achieve our vision.  The meeting brought together a diverse group of 64 individuals. 

Demographics of Summit Attendees

icms pie chart demographics

This year’s attendees kicked off day one of the Summit by reviewing iCMS’s core beliefs, vision and guiding principles.  Participants also thought about what is necessary and who should be involved to make our belief system and vision a reality (the “iConquerMS pathway”).

icms pathway graphoc
Graphic by Haley McDevitt

The next step in the dialogue was laying the pathway (or “stepping stones”) from where iCMS is to where we want it to be.  To get a clearer picture of the pathway’s starting point (where iCMS is), summit attendees celebrated the initiative’s accomplishments to date.  They did this via a Science and Engagement Fair in which presentations were given on iCMS’s main areas of focus.  Day two focused on applying this knowledge in order to get us a closer to our vision.

Graphic by Haley McDevitt

Day two began with breakout sessions focused on taking a deeper dive into ideas spurred by the Science and Engagement Fair.  Some exciting possibilities emerged from these discussions:

breakout session graphic

Summit attendees were challenged to expand on these ideas via Open Space technology.  Virtual discussion “rooms” were formed (each with a host) based on topics that participants wanted to explore further.  Individuals were able to move between the rooms and talk about how we might make each one possible (identifying next steps, or the stepping stones, needed to achieve these goals).

Here’s what we discussed!

Chat with Chat webinar series – Summit participants proposed continuing the “Chat with Chat” webinar series and shifting its focus to explore the essence of research. 

Proposed next steps –

  • Survey the iCMS community for topics

  • Collaborate with other groups to understand audience preferences

  • Keep researchers engaged

  • Create graphic summaries for each webinar

Close the information gap – Create a shared language for providers and patients to discuss both traditional and holistic medicine.

Proposed next steps –

  • Sponsor forums to educate all stakeholders

  • Develop self-advocacy tools

  • Create a script to discuss complementary treatments

  • Address cultural insensitivities in the medical community

Create a community of highly engaged researchers – Build a vibrant community of enthusiastic researchers through a focused communication and marketing campaign.

Proposed next steps –

  • Organize talks showcasing iCMS researchers

  • Encourage researchers to bring colleagues into the community

  • Press releases for funded/completed projects

  • A stronger presence on LinkedIn

  • Provide researcher incentives

Strengthen the healthcare professional/patient relationship through transparent communication.  Encourage patients to express themselves and advocate for their own well-being.

Proposed next steps –

  • Foster open communication & encourage active listening

  • Provide a database to physicians so newly diagnosed patients can research and connect

  • Promote cultural sensitivity during office visits

Increase engagement in the iCMS community by highlighting its benefits and ensuring a user-friendly experience for everyone.

Proposed next steps –

  • Personalized outreach

  • Participants share their experiences and reasons for joining

  • Create a toolkit for new users

  • Explore recruitment through specialized channels

Provide educational resources to those newly diagnosed with MS and their families. Work with other nonprofits to maximize resources and prevent redundant information.

Proposed next steps –

  • Create a concise one-page summary to share with newly diagnosed patients, incorporating resources like iCMS

  • Collaborate with pharmaceutical companies to develop clear guides and treatment information for the newly diagnosed

  • Education for both patients and their families

Quality of Life issues – Improve the lives of people with MS by facilitating research into new treatments for common issues like bladder dysfunction.  Advocate for laws that enhance overall quality of life.

Proposed next steps –

  • Acknowledge the varying impact of these issues on individuals

  • Fast track clinical trials, particularly through the Right to Try legislation

  • Propose a broader age range for clinical trials

  • Emphasize the need for research funding

Empowering people with MS to feel confident when talking to doctors and researchers so they can make informed healthcare decisions.

Proposed next steps –

  • Enhance existing documents

  • Empower patients to be self-advocates through support groups

  • Provide a guide for discussing research results with providers

  • Share success stories to inspire involvement in research

The iConquerMS Leadership Summit is a celebration of the work being done through the initiative in partnership with its stakeholders.  Participants strengthen relationships with each other and it is through these connections that good ideas and solutions emerge.  ACP’s CEO, Sara Loud, summed it up nicely at the Summit with her closing words, “The truth is that none of this could be done without all of you.  I’m so grateful that you are here and you come with openness and energy.  I know that is not always in large supply.  The fact that you expend much of it here is so meaningful to me and I’m looking forward to moving this work forward.”  The Next Steps Committee is energized to take the baton and place these stepping stones in our pathway to a cure.  We look forward to an exciting and productive New Year!  Stay tuned!

summit overview graphic
Graphic by Haley McDevitt