Findings
All 20 rare disease associations agreed that scientific communication was a critical function; their external communications plans were examined in six domains (Table 2).
Table 2
Responses from structured interviews with 20 rare disease associations
Category
|
Number of organizations (references made)
|
Sample Quote
|
Domain 1: Primary Audience
|
International reach
|
18 (74 references)
|
“We have chapters all over the world.”
|
Nationwide reach
|
15 (46 references)
|
“Our primary geographic area is the United States of America.”
|
Statewide reach
|
1 (1 reference)
|
“British Columbia and Alberta.”
|
Reach by specialty
|
7 (22 references)
|
“We will work on behalf of the specific disease.”
|
Reach by specific locations
|
3 (5 references)
|
“Under the banner, or in any case, with [name] as the nerve center, which [is] located in Brussels…”
|
General public
|
19 (58 references)
|
“Our audience has always been essentially the public; everyone, a nonscientific audience…”
|
Community-at-large
|
7 (17 references)
|
“Faith communities, sports teams, geographic, environmental groups that are concerned with health, Black Lives Matter groups, [and] lots of other BIPOC kinds of organizations.”
|
Patients, caregivers, and families
|
19 (117 references)
|
“...When we talk about patients, these patients are federated into patient associations and therefore patient associations are also a target audience to which, to which, we are turning more and more strongly.”
|
Providers
|
19 (66 references)
|
“We have health professionals so that they can learn about rare diseases and how to refer patients, or other professionals who work on these diseases.”
|
Researchers
|
13 (33 references)
|
“They are academic partners, hospitals, other research institutes, [and] scientific collaborations.”
|
Government and policymakers
|
13 (22 references)
|
“The political decision-makers. I think this is a very important target for us, for all who are involved or who are in the field.”
|
Industry and pharma
|
8 (9 references)
|
“And private partners, since we are deploying programs with manufacturers to bring diagnostic and therapeutic solutions to the market…”
|
Domain 2: Levels of Engagement Amongst Key Audiences
|
High audience engagement
|
20 (188 references)
|
“If we host a webinar and we put it on YouTube. Like the last one, we had a hundred views even before we put the link out because people were waiting for it.”
|
Low audience engagement
|
20 (109 references)
|
“We potentially have a few dozen sympathetic people who participate more or less actively in the life of associations. Otherwise, it's very passive.”
|
Engagement satisfaction
|
18 (52 references)
|
“We were; we were very pleased with the result.”
|
Engagement dissatisfaction
|
14 (41 references)
|
“I think we could have more effective communication.”
|
Domain 3: Leadership Support and Staffing Capacity
|
High leadership support
|
16 (34 references)
|
“We also have a board who we report to, and our chair is a digital advisor in his day job, so he's helpful as somebody who can help us with the messaging for campaigns.”
|
Low leadership support
|
5 (9 references)
|
“...Within the board, we really try to get the board and others to amplify what we're doing. But it's hit and miss in terms of what we do.”
|
Support capacity duties
|
14 (27 references)
|
“All project managers are also involved in communication.”
|
Leadership capacity duties
|
8 (16 references)
|
“My role is to help make sure we've shaped the message the way we want so that we're not just putting it out there.”
|
More than 1 person
|
15 (46 references)
|
“There are seven of us on the communications team.”
|
1 person at or below half-time employment
|
4 (10 references)
|
“Half my time, I give liaise communications. And I work 20 hours a week, so 10 hours a week of that is mine.
|
0 person
|
1 (1 reference)
|
“zero”
|
Multiple roles
|
17 (49 references)
|
“I’m the [Communications] Manager. I also do a lot of writing. A variety of website [tasks]. I’m a sort of Jill of all trades.”
|
Community outreach
|
11 (20 references)
|
“We have a patient coordinator, who is largely responsible for ensuring that patients have access to whatever assistance and resources they need, and that often is communication-based.”
|
Fundraising
|
4 (6 references)
|
“We have an events manager – well, events and fundraising person, whose role is obviously to raise the profile of us as an organization as well as of rare diseases in the community.”
|
Subcontracted services
|
18 (166 references)
|
“We also have an outside graphic designer as well that’s separate.”
|
Domain 4: Communication Channels
|
Social media as key
|
20 (316 references)
|
“We'll [certainly be using] Facebook, Instagram, Twitter, [and] other social media very heavily in that because it's less expensive.”
|
Events/meetings as key
|
20 (282 references)
|
“We have maybe four or five different educational events a month.”
|
Digital and printed materials
|
19 (139 references)
|
“We put together a book of over 200 stories of patients from every state around the country that was used to lobby congress to actually create a national commission to study the need for research on [specific] diseases.”
|
Measured success
|
20 (137 references)
|
“We do things like Google Analytics, [to] try to make sure we're easy to find.”
|
Domain 5: Written Communication Plans
|
Formal written plan
|
7 (30 references)
|
“We had to create a communication plan for five years. So that, of course, includes the types of tools that we were planning to use, but also, in fact, with each partner or let's say each part of an activity.”
|
Plan described as informal
|
5 (10 references)
|
“We worked on it and then we didn't finalize.”
|
No plan; interested in writing one
|
6 (21 references)
|
“We don't currently have a plan in place... I would say by the end of this year would be good.”
|
No plan; no interest in writing one
|
2 (6 references)
|
“I have no written [plan]—we make it up as we go along.”
|
Plan used for sustainability
|
7 (20 references)
|
“On [the] communication level, these are things that are validated, recorded with dates.”
|
Plan used for fundraising
|
2 (3 references)
|
“So the plan is not only to educate people, but hopefully to encourage funding entities to get involved in solving the problems and knowing exactly what the costs are in meeting those demands.”
|
Domain 6: Immediate and Long-term Strategic Needs
|
Immediate specific needs
|
17 (75 references)
|
“Our immediate need is this website project that we’re working on. We have a lot of work to do and not enough staff to do it, so we’re trying to identify priorities and new, more efficient ways to get it done.”
|
Immediate broad needs
|
15 (36 references)
|
“Time and resources.”
|
Long-term needs for audience
|
18 (63 references)
|
“It would be a better recognition for the Foundation at the level of the public authorities.”
|
Long-term broad needs
|
8 (16 references)
|
“Making sure that we get the key stakeholders and the people in various sectors to understand our mission.”
|
Long-term fundraising needs
|
8 (12 references)
|
“There are two staff positions that I already have job descriptions written for, if we could just get the funding to hire them.”
|
Long-term specific needs
|
6 (12 references)
|
“A new website.”
|
Long-term focused on immediate needs
|
3 (4 references)
|
“I think our biggest challenge is technology, right? Salesforce. Trying to get the data in, understanding who we’re communicating to.”
|
Domain 1: Primary Audience
Associations were asked to delineate their organization’s primary audience, including their desired geographic reach. Interviewees most often identified their primary audience as, patients, caregivers, and families (19 organizations, referenced 117 times). Specifically, patients were consistently cited along with either their families and caregivers, or related patient associations. Patients and their caregivers and families were mentioned most frequently by organizations that focus on rare disease impacting children. Several interviewees also noted that they considered patient organizations and support groups to be an equal audience with patients, caregivers, and families. Providers (19 organizations, referenced 66 times) were the second most cited audience type. Several interviewees described their goal to reach primary care doctors with information to help them diagnose and refer persons living with a rare disease. Interviewees also mentioned other providers they engaged with, including pediatricians, immunologists, and nurses. Medical schools were also referenced as a provider audience group. Interviewees considered educating people in the medical field as key to being able to provide early identification and treatment for patients. Researchers (13 organizations, referenced 33 times) from institutes of higher education, hospitals, or other research organizations were cited as a key audience for informing and communicating the latest research. Government and policymakers (13 organizations, referenced 22 times) were also identified as a key audience group. This included decision makers from federal agencies, legislative bodies such as the United States Congress, and international groups such as the European Commission. Representatives from industry particularly the biotechnology and pharmaceutical industries as well as private partners, were also referenced (8 organizations, referenced 9 times).
Ninety per cent of organizations (18/20) indicated that they had a broad international or nationwide reach (referenced 120 times in the interviews). Several interviewees also stated that their organizations targeted a specific rare disease (7 organizations, referenced 22 times) or by specific locations (3 organizations, referenced 5 times).
Domain 2: Levels of Engagement amongst key audiences
Associations were asked to describe their present levels of engagement amongst their target audiences. Interviewees described audiences that were highly engaged and instances when they were not engaged. None of the associations who participated in the study used objective assessment tools of communications effectiveness.
All interviewees provided examples of ways in which their key audiences were highly engaged (20 organizations, referenced 188 times). There were five main themes for audience engagement. The first was, participation at advocacy events to bring in speakers and build public awareness, such as Rare Disease Week, advocacy summits, education panels including school open houses, or specific disease days were commonly cited by interviewees describing high engagement. The second theme related to public engagement was regarding connections made by parents, family members, and patients. Interviewees described high levels of engagement from people with personal connections to specific diseases—most commonly parents of children with the disease, but also patients themselves or other family members. Engagement by these individuals was described as ranging from social media likes to testifying on panels or before lawmakers or potential funding sources. The third theme described social media exchanges and networking that included, Facebook posts and Facebook Live events, webinars posted on YouTube, email and newsletter open rates, website visits, and other media connections. Fourth, association advertised patient sponsored activities; here, interviewees noted that patient organizations can be among the most engaged stakeholders. Lastly, rare disease associations viewed research organizations as highly engaged audiences (e.g., for clinical trial recruiting and for spreading awareness.
Interviewees, conversely, delineated audiences with low engagement (20 organizations, referenced 109 times). Several associations described individuals who attended an event or, visitors to their website or but did not engage further. Interestingly one interviewee described how they did not view low engagement as negative: “Not everyone needs all of the services that we provide.”
Domain 3: Leadership Support and Staffing Capacity.
Associations were asked to explain leadership support, and catalogue staffing capacity. Interviewees described a variety of models for staffing communication functions at their organizations. Most (16 organizations, referenced 34 times) described that their leadership either performed the main communications functions for the organization or directly set communication priorities.
Organizational structures varied from a communications department with a dedicated manager to one or two key staff who handled communications functions or structures that relied entirely on volunteers. Some associations described how they worked with a fundraising or development department to provide external communications. A few interviewees described that their boards had limited engagement and/or provided limited support.
With respect to staffing capacity, most organizations had more than one person allocated to communications (14 organizations, referenced 46 times). At one extreme, one organization had a communications team of seven full-time people. Other organizations had either one person at or below half-time (4 organizations, referenced 10 times) or had “zero” staff for communications roles (1 organization, referenced 1 time).
Nearly all associations (18 organizations, referenced 166 times) indicated that they subcontracted services to enhance communication efforts. These services included, (a) design and print services, photography, videography, and website development, (b) public relations, media campaign, and marketing, (c) event planning, (d) proofreading and writing and (e) translation services.
Domain 4: Communication Channels
Associations described the methods they used to communicate to their audiences and whether they evaluated the outcomes of these activities. Social media was consistently emphasized (20 organizations, referenced 316 times) as the most effective method for communication. Facebook was identified by most as their most-used social media channel. Many interviewees mentioned that it was particularly effective for reaching patients, caregivers, and patient associations. Several organisations explained that, although they used many different social media platforms, Facebook seems to be the most popular with the public and “a catch-all.” Several also identified Twitter as a primary social media channel; frequently mentioned was the conversation potential and interactivity of the platform. Some also indicated that Twitter was their preferred channel for sharing news and resources. To reach researchers, professional colleagues, and for recruitment, interviewees indicated LinkedIn to be effective. Some mentioned that LinkedIn had smaller audiences but played a significant role in their communications strategy. Many organisations used Instagram to reach younger audiences. One organisation mentioned that Instagram was less resource-intensive than other channels. Fewer interviewees mentioned YouTube, but those who use it indicated that the video-sharing platform was valuable.
Events were used by all organisations to promote their external communications efforts (20 organizations, referenced 282 times). Events served various roles such as, raising awareness, gathering community, and disseminating information. Several types of events were supported, (a) hosting symposia, (b) conferences, (c) hosting panels of researchers and other stakeholders, (d) participating in conferences or on panels, (e) holding small stakeholder meetings, (f) organizing national or international rare disease days, (g) hosting summits for patients and caregivers, (h) organizing walks and, (i) supporting awareness days or fundraisers.
Digital and printed materials were used by nearly all organisations to promote external communications (19 organizations, referenced 139 times). Examples of such materials included reports, leaflets, and newsletters. Electronic materials included podcasts, videos, and electronic documents. Some organizations discussed how they had phased out printed materials for a variety of reasons including lack of in-person events, environmental concerns, and difficulties updating or translating them. Most interviewees mentioned their organizations’ websites as places to post electronic resources.
All associations (20 organizations, referenced 137 times) measured the impact of their communications efforts. The measure of success was often tied to usage statistics including website visits and clicks, email open rates, social media engagement, video views, and donations returned from mailers. While the above statistics were the most reported type of evaluation, some associations also reported that they conducted surveys to evaluate user and community satisfaction.
Domain 5: Written Communication Plans
Associations were questioned about whether they had developed written communication plans and if so, how they were used. Less than half (7 organizations, referenced 30 times) indicated that their communication plan was in a formal written format and five (5 organizations, referenced 10 times) indicated it was less structured, informal, or outdated. Six other interviewees spoke about wanting to prepare a communication plan (6 organizations, referenced 21 times) even though they did not have one.
Of the seven with a formal written plan, interviewees discussed several practical applications for their communication plans for organizational sustainability and fundraising. Positive characteristics of existing communication plans included adaptability and flexibility whereby interviewees mentioned the benefit of being able to adapt their plan as goals and strategic priorities evolve within the organization. Formal communication plans defined clear objectives, goals, and messaging. Interviewees discussed how well their plan captured their overall mission and goals, including both strategic and operational activities. Lastly, formal communication plans reflected input from internal and external stakeholders helping the organisation better align with external agencies.
Interviewees with formal communication plans also recognized weaknesses and limitations of their plans. Interviewees articulated the lack of resources and the need for prioritization being realistic as to what is attainable. Also interviews expressed concern about the disconnect between the plan and fundraising goals. That noted, none expressed regret for formulating such plans.
Domain 6: Immediate and Long-term Communications Strategy
Associations were asked about their communication needs and strategies, in the immediate- and long-term. Key needs fit broadly into three themes: community outreach, press and media relations/advocacy, and fundraising. Several organizations (11 organizations, referenced 20 tines) identified communications with their key audience groups as one of their pressing priorities. Several interviewees mentioned their websites as a primary delivery method for information. Others mentioned reaching out to audience groups via email or newsletters, using blogs, podcasts, or videos, and/or facilitating conversations through social media channels. One organization employed a former journalist to write patient narratives.
Some interviewees (5 organizations, referenced 9 times) identified communication with the mainstream press and advocating for coverage and awareness of their particular interest areas. Methods used to achieve these goals included press releases, press conferences, speakers and/or events. Technologies included, websites, videos, newsletters, social media channels, blogs, podcasts, and videos.
All organisations were questioned about their funding needs for professionalized external communications. Some interviewees (4 organizations, referenced 6 times) also described the importance of their communications efforts for fundraising with funding gaps ranging from $3,000 to $300,000. Interviewees noted that their most pressing need was to fund staff positions, such as social media staff, social media managers, web developers, service providers, community managers or general communications staff. A few organisations noted that funding a communication position is especially difficult when grants rarely cover the position.
Interviewees identified specific technology needs for communications including improved data management and integration systems, updated collaboration systems, and updated technology infrastructure that would support personalization for website visitors and other users.
Long-term communication needs for rare disease organisations focused on four strategic areas. The first was to better understand and characterize audience needs. The second was to better clarify and develop a focused external messaging; several organisations noting that too much “noise” in the field hindered their ability to communicate effectively with the public. The third area of long-term focus was to reach new and diverse audiences, including people who speak different languages and younger people. Interviewees identified several methods they would like to incorporate to connect with these groups including translated websites, social media, videos, larger campaigns and having hospitals and other community organizations offer brochures. Lastly, rare disease organisations identified the need for increased credibility, recognition, and sustainable fundraising.