Creating a Virtual Environment to Enable Two-Way Learning about the Relevance of Clinical Research.

The existence of online health communities demonstrates that patients will find ways to fill their gaps in scientific and clinical information, whether their sources are accurate or not. Technology can improve the exchange of information among patients (1, 2) but does not often incorporate the perspectives of research professionals. Here we describe a unique way to accomplish this in a virtual environment.

The estimated 34,000 individuals in the United States with cystic fibrosis (CF) and their families want information, but barriers of geography, time, expense, and risk of cross-infection (3) prevent one-to-one contact; clinical guidelines indicate that two people with CF should not be in the same room and that they should stay at least 6 feet apart when outdoors. The Cystic Fibrosis Foundation (CFF) designed a virtual environment where people with CF can interact in real time with each other, much like attending a conference in person (4). Since inception in 2016, these events have focused on a wide range of topics related to living with CF day to day and, until recently, were limited to those directly affected by CF. To address expressed desire from the patient with CF and family community for interaction with subject matter experts (SMEs), a virtual conference was developed with a focus on CF research.

On February 28, 2019, the CFF hosted ResearchCon, a virtual event about CF and infections that focused on sharing information and connecting people. Clinical researchers with expertise on specific topics were invited to participate in cocreation of the event to facilitate two-way exchange of scientific information and lived experience between the CF and the clinical research communities. A compilation of technologies supported the event. The planning group used video conferencing (BlueJeans Network Inc.) for real-time meetings and sharing platforms for dyssynchronous collaboration (Slack Technologies, GoogleDocs, Alphabet Inc.). Registration and peer-to-peer promotional software were provided (Swoogo, Emma). The event was executed using video conferencing embedded in a virtual event platform (6Connex) to host users’ online presence and enable social chat. Video information and small breakout sessions were hosted in BlueJeans, where users were able to ask questions, receive answers, and join speakers on screen via live video. (Of note, the CFF is changing the technology to enable scaling and improve user experience). The format included video information sessions, where SMEs and community members (CMs) presented scientific and personal information. Small-group video sessions enabled people with CF and family members to discuss the impact of infection on daily life; these included a trained facilitator who was a CM.

Although technology is essential, patient engagement to shape the agenda and to assure that sessions are focused on questions relevant to the community are critical parts of our method.

For 4 months before the event, the CFF convened a planning committee of 30 people—including adults with CF, parents, clinicians, researchers, and CFF staff members—to identify the topics of greatest importance to the community and create interactive sessions that reflected the diversity of the issues, available research-based answers, and gaps in knowledge. Every information session included both SMEs and at least one person with CF or a family member. Together they provided information, shared stories of personal experiences, and answered audience questions (Table 1). Potential information session formats could involve 1) a presentation by an SME followed by a conversation with the CM, 2) an interview of the SME by the CM, 3) each sharing their perspective on a topic, or 4) SME(s) giving brief talks followed by questions and answers moderated by the CM. Technology-enabled collaboration was essential to create a comprehensive program that offered something to every participant, whether the parent of a newly diagnosed child or someone who has been living with CF for decades.

Table 1.

Sessions offered at ResearchCon 2019

Session Type (time)	Session Title	No. of Attendees	Session Construct
Keynote (1 h)	Knowledge is Power: The State of CF Infections and Treatments, and Hope for the Future	507	No competing session; 4 speakers (1 was a community member)
Session A (simultaneous sessions) (1 h)
Information session	All Bugs are Not Created Equal: An Introduction to the Facts and Fictions of CF Infections	161	3 speakers, including 1 community member moderator; all didactic
Information session	Aspergillus Aspirations: Conquering Fungal Infections and Allergy in CF Lungs	80	3 speakers, including one community member moderator; one-half didactic, one-half Q&A
Information session	Inflammation in CF: Friend or Foe?	111	3 speakers, including community member moderator; one-half didactic, one-half Q&A
Information session	NTM Myth-Busters: Fact, Fiction, and the Future	90	3 speakers, including community member moderator; two-thirds didactic, one-third Q&A
Information session	Real-World Challenges of Treating and Preventing Infections	148	4 speakers, including 2 community members, 1 of whom moderated; three-fourths didactic, one-fourth Q&A
Session B (simultaneous sessions) (1 h)
Information session	Antimicrobial Resistance in CF: Background and Latest Research	93	3 speakers, including community member moderator; three-fourths didactic, one-fourth Q&A
Information session	CF and the Gut Microbiome	134	3 speakers, including community member moderator; one-third didactic, two-thirds Q&A
Information session	CF Sinus Disease and Infections	97	4 speakers, 2 of whom were community members, 1 of whom moderated; one-half didactic, one-half Q&A
Roundtable	Coming Full Circle: A Roundtable Discussion with Adults Who Have CF and Work in Science and Research Jobs	61	Round-robin panel with 5 community members

Definition of abbreviations: CF = cystic fibrosis; NTM = nontuberculous mycobacteria; Q&A = question and answer.

Note: All sessions had simultaneous social chat and separate Q&A stream visible to the session leaders.

A total of 689 people (aged 16 to >61 years) attended ResearchCon via their computers, with 10 total hours of interactive scientific programming. More than 400 questions were asked throughout the event (e.g., “Does Aspergillus infection have a different taste?” “Does the role of inflammation change after transplant?” “How likely is it that phages will work?”).

One aspect of all CFF virtual events is that real identities are used, and the community self-polices to keep the environment positive and respectful. Although not formally tracked, one example during ResearchCon was that when a CM began to recommend a non–FDA-approved treatment in the chat feature, another CM noted this and stopped the conversation. Another recommended talking to one’s care team before making changes in treatment.

A post-event survey was fielded immediately after the event and was open for 12 days. Of the 173 attendees who responded (25% return rate), 95% would recommend this event to others; many agreed or strongly agreed they learned something from ResearchCon that they will apply in their daily lives (65%) and/or that they gained a new perspective (46%).

Ninety percent of respondents entered free text to the question, “What did you enjoy most about this virtual event?” CMs noted that hearing from clinical experts and people affected by CF together made the content relatable and relevant and that they appreciated the diversity and quality of the information as well as the convenience of attending from home. In informal feedback, clinician presenters echoed that the sharing of real-life experiences complemented their presentations and provided new insights on ways to explain research to their patients. One wrote, “(It was) great to see clinician leaders and adults and parents facilitating sessions together. Questions from the audience were sophisticated…(it) felt like the clinicians were learning alongside people with CF and families.”

The weaving together of scientific information and personal experience into each session was an innovation that affected attendees’ abilities to relate to and apply dense scientific information to their own lives. Participants were able to engage in a novel kind of conversation that facilitated new learning and empathy, and other community members could affirm and support their thoughts and questions. Researchers benefitted as well. In summary, cocreated virtual spaces can empower the patient community to use up-to-date research and personal experiences to better manage their disease and can give researchers new insights into the real world of living with a chronic condition.