Redefining the message

Editor's note: Kelly Hancock handles communications for the Qualitative Research Consultants Association. Visit www.qrca.org for more information.

For years, the Crohn’s and Colitis Foundation of Canada (CCFC) focused on finding a cure. Education about the diseases and support for people who suffer from them fell into the mix but were overshadowed by fundraising efforts to help fund research. However, with a growing number of patient requests for information and support, the foundation took a broader look at its mission and wanted to identify the biggest patient needs and opportunities for the association to make a difference. The CCFC turned to qualitative researcher Layla Shea, a member of the Qualitative Research Consultants Association (QRCA) and founder of Upwords Marketing Solutions, a Victoria, B.C., research firm, to help identify and understand the greater needs of the patients the foundation serves.

Shea’s study, which won a QRCA Qually Award earlier this year, offered insights that changed the way the organization prioritizes activities and outreach. It helped further the development of the CCFC’s efforts in finding a cure, raising awareness and educating patients, families and health care professionals about Crohn’s and colitis.

Make it easy

Shea’s approach needed to make it easy for Crohn’s and Colitis patients to participate. She chose an online method for two key reasons:

Sensitivity to patient needs. Some Crohn’s and colitis patients find it difficult to be away from home for even a few hours because of the nature of their diseases. Shea also wanted to remove the social pressures that come with discussing such a personal topic in a face-to-face setting.

Geographic reach. The CCFC serves a large geographic area. Conducting online research afforded opportunities to hear from respondents across all of Canada in a single study.

The 10-day study included two activities each day – one poll and one engagement activity. The daily poll question asked, “Was today a good day or a bad day and why?” Shea’s activity-based conversations stimulated more discussion and personal interaction than a standard set of questions. “I took a very personalized approach to communicating with study participants,” Shea says. “I made contact with each respondent individually prior to the study, so they knew a little about me. This allowed the participants to feel more comfortable about sharing and communicating with the group. Respondents sometimes forgot they were taking part in research and just opened up. They began organically talking to each other almost immediately.”

The interaction between respondents throughout the course of the research revealed the wide range of emotions that patients experience. Shea was able to capture many of the frustrations, concerns, inspirations and encouragements that Crohn’s and colitis patients encounter. These insights stemmed from the high level of engagement in each day’s activities, which were designed to understand the everyday life of a patient. Activities were meant to allow participants to relate to each other, share ideas and offer support.

For example, the “Let’s Vent” activity called for respondents to post about the things that frustrated them. They were encouraged to write about things that irritate them or post photos or videos that described how they felt. This activity sparked a lively conversation among respondents, who instantly began building on each others’ posts and stories.

Another activity, “Show and Tell,” encouraged respondents to take pictures and videos of their refrigerators, medicine cabinets, etc., share them with the other participants and explain how certain items help in coping with their disease. This gave Shea valuable insights about the less obvious symptoms and unconventional yet effective ways to handle them.

A more strategic approach

With the CCFC’s desire to take a more strategic approach to patient communications, the research findings needed to help the foundation understand what patients go through in their search for information. Shea helped identify three specific stages of Crohn’s and colitis diagnoses and the needs associated with those stages:

1. Pre-diagnosis – “What is wrong with me?”
The information needed while symptoms occur before a diagnosis is made.

2. At diagnosis – “Help me understand.”
The desire for more information about how a patient’s life will be affected and what he/she needs to do to manage the disease.

3. Post-diagnosis – “Help me take control.”
How can a patient create a meaningful life while managing this disease?

The CCFC created three specific communication strategies, tailoring tactics and messaging to the distinct needs and feelings of patients in each stage.

Pre-diagnosis

From the perspective of someone who has symptoms of Crohn’s disease or colitis but has not yet been diagnosed, the CCFC serves as a resource for understanding what specific symptoms mean and how they should be dealt with. People who suspect they have Crohn’s disease or colitis can find Webinars, Q&A forms, hyperlinks to directories of nearby medical professionals and supportive online communities and more as they browse the CCFC Web site. The CCFC also utilizes social media platforms and hosts live educational conferences to provide information to patients who are undiagnosed and seeking understanding.

At diagnosis

The research highlighted the increasing importance of the CCFC’s role during a patient’s diagnosis meeting. Many respondents said they still had a lot of questions when they left diagnosis meetings with their health care professionals. Shea’s follow-up with medical professionals revealed that they wanted, of course, to better serve patients, but they didn’t have access to materials that provided answers to key patient questions. Shea indicated that one nurse practitioner went as far as to put together her own information booklet to give to new patients. “Many of the medical professionals we reached out to were excited to learn that this information exists and is already put together for them to provide to patients,” Shea says.

The CCFC was glad to be able to connect the dots. “We refined our strategy to say, ‘This is what patients are looking for. Here’s what doctors are looking for to help patients. Here’s where we can play a role in that interaction between physicians and patients,’” says John Branton, chief development officer for the CCFC.

The foundation reworked its brochures and provided them to medical professionals so patients could see that the CCFC is a resourceful provider of information and support from the very beginning.

Post-diagnosis

The CCFC learned that it’s important to show patients how to better utilize technology, as the research exemplified ways to find Crohn’s and colitis support groups online. In addition, qualitative insights found that patients wanted tools and information to share with employers and schools to explain what their disease is like. Patients also wanted more awareness among the general public, so others know what they’re going through.

Realign its materials

The CCFC used the findings to realign its communication and education materials with the needs of both patients and health care professionals. “The research validated some of our key strategies and helped us refine how we positioned some of the topics,” says Branton. “It helped identify new areas that we didn’t even know about, which resulted in many new tools for patients. We were able to see what we should stop doing, what we should start doing and what we should refine or keep doing.”

Branton attributes the development of the CCFC’s patient-centered business model to the findings of the study. “We didn’t know much about qualitative research or what it could do for us,” says Branton. “We gave it a chance and Shea’s research ended up being invaluable to us. From validating key brochures to creating new online resources for our patients, the insights are even helping us devise our strategic five-year business plan right now.”

Branton and Shea agreed that their most important qualitative insights led to a three-pronged approach for patients to deal with their disease. The research manifested patients’ needs for information, empowerment and support. “The CCFC’s sole focus was on funding research to find a cure for Crohn’s and colitis. Thanks to insights from Shea’s study, we have become much more dynamic and grown as a foundation with a greater purpose,” says Branton. “The research study findings are prompting us take a more active role in educational outreach and other support mechanisms for patients.”

Upward trend

The organization’s efforts appear to be working. Branton says there has been an upward trend in the number of inquiries for information since the new communications were implemented. There also has been a significant increase in the number of people attending CCFC conferences and educational events. And the foundation has seen an increase in attendance and donations at its fundraising events.

So the research clearly helped the CCFC. But more important, it is helping Crohn’s and colitis patients meet their own individual needs and also enjoy the satisfaction of easing the lives of others whose situations are similar to their own. Throughout the research process, participants showed a sincere interest in supporting each other and helping the CCFC advance its communication efforts, Shea says. “They didn’t want others to go through what they had gone through and they knew they could make a difference. Their support for each other translated into having a positive impact on the entire study and, therefore, developing resources for others.”