resources for researchers

More than 2,600 women and 600 children from areas of Louisiana most severely affected by the largest marine oil spill in history participate in the WaTCH (Women and Their Children’s Health) Study. Dr. Edward Trapido, associate dean for research at the Louisiana State University Health Sciences Center is the principal investigator.

In April 2010, the Deepwater Horizon oil spill (DHOS) released more than 5 million barrels of oil into the Gulf of Mexico. It affected, and continues to affect, the physical, mental, and community health of diverse populations, including Vietnamese, African-American, Latino, and indigenous communities.

The recruitment goal for the study’s prospective longitudinal cohort was 2,500 women. “Women...represent an influential yet vulnerable and understudied population. They are often central to decision-making processes within families and households, particularly with respect to decisions regarding health, support, diet, and child rearing; and they have remained relatively understudied with respect to the DHOS,” WaTCH researchers wrote in a recently published article, “Untangling the disaster-depression knot: The role of social ties after Deepwater Horizon.”

Messaging, materials, and a long-term strategy

WaTCH faced many challenges when it set out to examine the effects of the spill on the of its most vulnerable victims. HCC worked with the study team to conduct focus groups with local community members who helped us understand their concerns and priorities. Distrust of research was coupled with worry about the potential effects of study participation on their involvement with ongoing BP litigation. Many women mistakenly felt that because they considered themselves relatively unaffected by the spill, their participation had no value. A desire to help their communities provided motivation for them to consider participation, however.

Based on what we learned, HCC developed a communication strategy to support recruitment efforts through multiple channels: phone, door-to-door, local events, print materials, word of mouth, and online on the LSU website. From the outset we also addressed the importance of retaining participants over time. The strategy addressed the cohort’s unique barriers and drivers to participation. Key messages emphasized that WaTCH is a local project, conducted by a respected and trusted research center that cares about the community, and the only oil-spill study that focuses on children. Another important message was that the study valued and respected the time, privacy, and experiences of its participants.

HCC developed the WaTCH logo and recruitment materials. We also worked with the study’s communication specialist to develop an easy-to-use template for retention newsletters that keep participants engaged with updates on what is being learned, thus reinforcing the significance of their commitment.

A unique approach

Until now, very little research has studied the long-term health effects from oil spills and associated clean-up efforts, in particular to spills presenting ongoing exposure (e.g., through food consumption) and acute and long-term health risks. In addition to conducting a comprehensive investigation of the health effects associated with an oil spill (and disasters in general), WaTCH integrates traditional nutritional and molecular epidemiology with an emerging resilience and recovery construct.

The WaTCH study is a member of the Deepwater Horizon Research Consortium, a network of community and university partnerships funded by the National Institute of Environmental Health Sciences (NIEHS), an institute of the National Institutes of Health (NIH). 

Smoke-free housing billboard #1

The health effects of secondhand smoke are well-documented and, 10 years ago, a Surgeon General’s report confirmed that building ventilation systems do not prevent smoke from moving between units.

Eliminating smoking in enclosed spaces is the only way to completely protect people from exposure but, although smoke-free workplaces, restaurants, and bars are legally mandated, neither local, state, or federal laws address residential settings.

To encourage voluntary adoption of smoke-free policies by landlords, especially in subsidized and affordable housing, the Health Communication Core worked with Boston Public Health Commission (BPHC) to create an awareness campaign. The goal of the campaign was to increase awareness of the benefits of smoke-free housing for landlords, their properties, and their tenants; and provide landlords with actionable, up-to-date resources to help them voluntarily implement and maintain smoke-free policies.

Exploring motivations and barriers to smoke-free housing

Smoke-free housing billboard #2Focus groups with landlords helped identify their informational needs and preferences. The focus groups also identified common misconceptions about going smoke-free. For example, many landlords were surprised to learn that there is no legal “right to smoke” in buildings with multiple housing units, and that a no-smoking rule is not discriminatory toward smokers.

In response to landlords’ interest in learning about other landlords’ experiences, HCC developed a peer-delivered theme for the campaign. “We went smoke-free” features portraits of real landlords and their properties, which ranged from an owner-occupied triple-decker to professionally managed complexes with hundreds of units.

Resources designed to meet landlords’ informational needs

Cover of the landlord guide for the Smoke Free Housing projectTo help landlords understand and successfully complete the process of transitioning to smoke-free housing, HCC developed a 24-page Landlord Guide to Smoke-free Housing (download PDF). The Guide presents the benefits of going smoke free, a step-by-step process to implementing and maintaining smoke-free properties, and answers to common questions like whether hookahs, medical marijuana, and e-cigarettes are included in smoke-free policies. The Guide also incorporates dozens of insights and suggestions from other landlords, in their own words.

Translating research evidence to address health disparities

Smoke-free housing billboard #3“We want every family in Boston, in all our neighborhoods, to have a safe, healthy home environment,” said Mayor Martin J. Walsh when the campaign launched. “I applaud the efforts of this program to improve the health of Boston residents by making it easier to find and live in a home environment that supports long-term health.”

The campaign was supported by the Centers for Disease Control, which provides funding to BPHC through its Racial and Ethnic Approaches to Health (REACH) and Partnerships in Community Health (PICH) programs.

Read about the campaign in the Dorchester Reporter

The Health Communication Core (HCC) produces low-cost outreach materials to meet the needs of researchers attending scientific conferences and other events that offer the opportunity to:

  • Increase access to the technologies they offer
  • Collaborate with other investigators
  • Recruit participants to their studies
  • Disseminate their research results
  • Attract talented new research staff

Seasoned conference attendees are selective when presented with takeaway materials and ruthless about what they actually take home with them. If it doesn’t attract their attention, they’ll leave it on the display table. If it’s bulky, they’ll leave it in their hotel room. They are most likely to notice and hold on to materials that:

  • Attract their attention
  • Clearly target their specific needs
  • Provide at-a-glance information
  • Look professional and high quality
  • Prompt follow-up action

HCC developed Understanding PReP (UP), an online decision aid for men having sex with men who may benefit from HIV pre-exposure prophylaxis (PrEP). The UP tool and website needed a program card (see image above) to help recruit providers and patients to a study to test UP's effectiveness.

Here are some additional examples of oversized “conference cards” HCC developed to help researchers make the most of opportunities for visibility and connection at scientific events. Each card has a distinct audience and goal, and its content and visuals are strategically developed to engage people and prompt action.

Contact us for a free consultation on how health communication can support your research goals.

Inflammatory Breast Cancer Program

The Inflammatory Breast Cancer (IBC) Program at Dana-Farber Cancer Institute needed to provide newly diagnosed patients with information and support to access expert care through Dana-Farber’s IBC program.
Audience: Potential and new patients 
Goal: Affirm the information communicated in clinical meetings about the benefits of receiving care at DFCI and the resources available to address the most pressing barriers (housing, parking)

Center for Cancer Genome Discovery (CCGD)

CCGD develops new technologies for discovering genomic alterations and evaluating their clinical significance for cancer diagnosis and therapy.
Audiences: Basic, translational, and clinical investigators
Goal: Increase collaboration and access to technologies

Lurie Family Imaging Center (LFIC)

LFIC is a pre-clinical imaging facility that provides investigators with access to all major pre-clinical imaging and therapeutic modalities and new radiochemistry technologies. This conference card is a companion piece to the LFIC website developed by HCC.
Audiences: Pre-clinical and translational cancer researchers
Goal: Increase access to services and expertise

MoodNetwork

MoodNetwork is a PCORI-funded patient-powered network that aims to engage 50,000 people with depression and bipolar disorder. MoodNetwork’s study team at Massachusetts General Hospital partners with major national and international associations, alliances, and foundations, who disseminate the MoodNetwork card at their events.
Audience: People with depression or bipolar disorder, physicians, and researchers
Goal: Increase awareness of, and engagement in, MoodNetwork

Tobacco Research Network on Disparities (TReND)

TReND, a five-year NCI-funded research network, disseminated information and resources to  support efforts to eliminate tobacco-related health disparities. 
Audiences: Researchers, policymakers, and practitioners
Goal: Translate research into practice and policy

Images of social media icons

Scientists and academics are increasingly adopting social media to increase the visibility of their work, stay up-to-date in their fields, and connect with other experts. The National Cancer Institute (NCI) now uses Google Hangout, Twitter chats, a YouTube channel, Facebook pages in English and Spanish, an Instagram account for posting cancer-related images, and LinkedIn groups to facilitate research. To encourage the use of social media as a research tool, NCI publishes guides for investigators.

The rapid emergence and evolution of social media can be bewildering though. New networks regularly appear--some expire quickly, others take hold. Some earn credibility and create extensive communities. Most are easily accessible and generally free of charge, but figuring out what to use, and how to use it effectively, can be time consuming and daunting if you’re new to the social media environment or if your familiarity is focused on a few favorites.

Specific channels, and how they are used, should be strategically determined based on the audience--the communication channels they prefer, when they are online, and what engages them. We work closely with our clients to develop targeted social media strategies. After creating an online presence and building a community of followers, we can often hand over the ongoing management of the page to the client so it is sustainable long-term.  HCC has developed social media strategies for:

  • Study recruitment
  • Participant retention
  • Intervention development
  • Dissemination
  • Fostering a donor community

Here are some examples of how we’ve used Facebook, Twitter, and other social networks to address research challenges. Contact us for a free consultation on whether, and how, to incorporate social media into your research.

Nurses Health Study 3 (PI: Jorge Chavarro, MD, ScD, Harvard T.H. Chan School of Public Health)

Goal: Recruit and retain the “next generation” of the Nurses Health Study

HCC used multiple social media networks to recruit a diverse and younger cohort: Facebook to reach nurses who could spread the word among their peers, Twitter and LinkedIn to engage nursing schools and associations, and Craigslist to directly recruit participants.

The NHS3 Facebook page, which now has nearly 60,000 followers, supports retention with frequent updates about the study’s successes. Read more about our social media work with NHS3

MoodNetwork (PI: Andrew Nierenberg, MD, Massachusetts General Hospital)

Goal: Build a PCORI-funded “patient-powered research network” to collect data about depression and bipolar disorder

MoodNetwork’s Facebook strategy capitalized on the powerful social media presence of the advocacy groups with which the project partners. HCC established the MoodNetwork Facebook page, developed graphics for sharing by followers, and developed posts--including those requiring IRB approval--until the page was well-established.

After building a community of more than 1,500 followers, HCC transitioned maintenance of the page to the study team. Read more about our work developing MoodNetwork’s Facebook presence.

WebQuit (PI: Jonathan Bricker, PhD, Fred Hutchinson Cancer Research Center)

Goal: Recruit daily smokers from across the US who are interested in quitting smoking

Because participants in this study had to meet narrowly defined eligibility criteria, we used paid Facebook advertising to target specific demographics, geographic areas, and interests.

Enrollment rates exceeded monthly quotas, and the ads cost less per enrolled participant than the researcher’s previous campaigns. Read more about how we helped with WebQuit recruitment.

Be Well, Work Well (PI: Glorian Sorensen, PhD, Dana-Farber Cancer Institute)

Goal: Engage nurses in a pedometer-centered fitness challenge

A one-month intervention to promote walking provided nurses with pedometers and encouraged them to track daily step totals on their unit’s private Facebook page for a 10-day challenge. Read more about the Be Well, Work Well intervention for nurses.

Pediatric Low-Grade Astrocytoma (PLGA) Program (Director: Mark Kieran, MD, PhD, Dana-Farber Cancer Institute)

Goal: Build a community of supporters

The PLGA Program’s Facebook page provides ongoing updates about its research to find more effective, less toxic treatments--and, ultimately, a cure--for children with brain tumors. The program was established by a group of dedicated donors who, together with PLGA Program staff, leverage Facebook’s reach to spread the word to other potential supporters. Read more about our work with the PLGA Program

Tobacco Network to Reduce Disparities (Client: National Cancer Institute)

Goal: Disseminate research on tobacco-related health disparities

HCC used Twitter’s ability to track breaking news in real-time to quickly and broadly disseminate the latest advances in knowledge about tobacco-related health disparities to a global audience and increase access to research findings.

“We’re worried our brochure may be too high-lit and hard for people to understand.” This is a common concern we hear from researchers about their study communications, whether they are for recruiting and retaining participants, or providing useful information.

Among the services the Health Communication Core offers are writing and editing to ensure materials are clear, understandable to the target audience, and meet the material’s communication goal.

Following are some of the steps we use to evaluate and simplify materials that you can use as well:

1. Define the audience.

Take a moment to clarify the audience who will be reading your materials:

  • Colleagues at a conference?
  • English-speaking smokers who are ready to try to quit?
  • Recently immigrated women in their 20s who speak little to no English?
  • Middle-aged African-American men who have just been diagnosed with prostate cancer?

You need to know the audience you’re talking to, as precisely as possible, to communicate well with them. Write down what you know about your audience, and learn what you can about their literacy levels.

If your audience is broad, think about who is most likely to respond to the material and target the literacy level accordingly, or be sure it’s accessible to people with the lowest literacy levels who may read it. Clear, concise information that’s easy to read is appreciated by everyone and won’t exclude anyone.

2. Include a call to action.

What do you want your audience to do as a result of reading your material? Make sure you have explicitly told your audience what you want them to do (go somewhere, call someone, visit a website, fill something out, share with a friend), as well as why they might want to or how it will benefit them to do so. Be sure the specifics on how to do this action are included.

3. Read through your material from the audience’s perspective.

As you look at the material through your audience’s eyes, ask some questions:

  • Is the information clear?
  • Does all of the information need to be there, or can some be cut?
  • Does anything need to be explained more? Have someone read the material who isn’t familiar with the project to help identify these things.
  • Is the most important information up front or higher up in the piece? This is important in case your audience doesn’t read its entirety.

4. Change longer/more complex words to simpler words.

This might mean using more words to say the same thing, but if the words are simpler and clearer, that’s good for an easier literacy level. For example:

  • Use instead of utilize
  • Get instead of acquire
  • Something that causes cancer instead of carcinogen
  • People instead of individuals (also look out for referring to your audience as patients, which is sometimes appropriate, but often indicates a perspective most people don’t share about themselves)

5. Get rid of jargon.

Just because a term is familiar or used often around you doesn’t mean it’s not jargon. Consider whether several people on the street would understand a term or if it is particular to research or academia?

Morbidity, outcome, risk assessment, and screening are examples of words that should all be simplified or explained when writing for a general audience.

6. Get rid of extra words.

Most of us put extra words in when writing; sometimes they’re helpful, such as explaining more complex terms or providing a conversational tone, but sometimes they’re just giving your audience extra information to read. For example:

  • In order to can be shortened to to
  • Phrases like it’s important to understand that are usually unnecessary and can be deleted
  • Descriptive words like very, really, extremely

Free consultation

If you’d like help making your materials easier to understand, contact us for a free consultation.

Additional resources

Visit the Center for Disease Control and Prevention’s website for:

Visit the National Institutes of Health website for:

Image of a lock to denote security

The Health Communication Core (HCC) currently manages 20 websites that were developed between 2009-2012 in Joomla 1.5 and 2.5. (Joomla is one of many available online software systems used for website development and management). Joomla no longer supports these older versions and no longer issues security updates  for them.

Joomla security risk

In December 2015, HCC was notified by Harvard University Information Technology about a new security risk in Joomla versions 1.5 and 2.5 that was being used against Harvard systems. (Please see below for more information about Joomla.)

We have moved all Joomla website files and databases from HCC’s web server to external servers hosted by Amazon Web Services (AWS), where they are essentially “quarantined”--still online and accessible, but isolated on a separate server to prevent their security risk from affecting other websites and web servers across the Harvard system.
 
This is not, however, a complete solution, and we have been advised to “move away from these unsupported versions of Joomla as soon as possible.”

Long-term solutions

Some of the affected websites were developed for studies that have ended, while others are lab or center sites that are still receiving web traffic.

With the approval of the appropriate PIs, we are taking offline and archiving the files for several older Joomla sites developed for studies or funding cycles that have ended.

For websites that are still active, the optimal solution is to transition to Drupal. In 2013 HCC adopted Drupal as its web development platform of choice because it offers robust development capabilities--meeting the needs of complex, powerful sites, as well as small sites--and a user-friendly content management system that allows our clients to easily and independently update their site content.

Many companies and institutions have adopted Drupal as their content-management system of choice, including Weather.com, The Economist, Museum of Fine Arts Boston, and Whole Foods.

Mobile-optimized display, enhanced search engine rankings

As user behavior and devices have evolved, sites developed more than a few years ago are showing their age--for example, they don’t display well on today’s popular mobile devices.

While Joomla’s security risk may be the impetus for migration to Drupal, transitioning to Drupal provides site owners with an opportunity to benefit from:

  • A web presence as cutting-edge as your research
  • Updated technology, including mobile-optimized display
  • Improved usability that reflects changes in user preferences
  • Enhanced search rankings (search algorithms favor mobile websites)

Drupal transition options

The most cost-effective way to transition a site to Drupal is for us to replicate its current content and structure, adapting the layout/design as required by newer mobile templates.

However, site owners should, whenever possible, consider leveraging the transition as an opportunity to assess their audiences and goals, and develop new graphics, content, and appropriate functionality.

These options represent two ends of a spectrum, and we will work with each client to determine the best approach based on the project’s needs and resources.

We will meet with each client to review the current site’s content, structure, web traffic data, and original communication goals. We will also discuss, page by page, the implications (opportunities and limitations) of adaptation to a mobile-friendly Drupal template.

Cost

To minimize cost as much as possible, HCC has developed a streamlined process that includes:

  • Replicating the website’s existing graphics, content, logo, colors, and typography in a new Drupal site with the same site structure as the original site
  • Adapting the current page layout as needed for a user- and mobile-friendly template
  • Making minor updates of content--for example, staff listings or news items

However, the number of pages, types of graphics, interactive functionality, and layout complexities of a site are among the factors that will affect its cost. Clients may also request enhancements that will increase the cost of migration, such as:

  • New content requiring editing, re-organization, or additional pages
  • New color palette
  • New graphics
  • New interactivity
  • Customized page layout

Based on each site’s needs and resources, we will develop a customized proposal and cost estimate.

Design

The visual approach of the current site will be adapted to the extent required for optimal display across a range of mobile and desktop devices. Website conventions have changed dramatically over the past few years in response to user preferences and the adoption of smaller mobile devices. A few characteristics of newer sites are:

  • “Hero” images (single large images extending across a page)
  • Streamlined navigation
  • Concise, easily scannable content
  • Larger fonts
  • Long scrolling pages

The most significant layout changes will be apparent on an updated home page. HCC will adapt each site’s current home page and a sample internal page and review them with the client to resolve any layout or formatting issues.

Web development

Once the new site has been built, clients will be provided with a link with which to review it. After signoff, we will arrange for the current site’s URL to point to the new site. After launch, we will provide staff training in the new content management system and a copy of our Drupal user guide.
 

ADDITIONAL INFORMATION ABOUT JOOMLA

In December 2015, HCC was notified by Harvard University Information Technology that: “A critical vulnerability has been discovered in Joomla [versions 1.5 and 2.5] that can lead to data theft and remote code execution....The exploit is currently being used in attacks across the internet, including attacks against Harvard systems.”

HCC applied available security patches and subsequently moved all Joomla website files and databases from HCC’s production server to Amazon Web Services (AWS), where they are still available on the internet but essentially “quarantined.”  HCC is absorbing all AWS hosting costs and will not charge clients for the process of moving their sites.

This is not a complete solution, however, because these sites can still be accessed by hackers--for example, to send massive amounts of spam email. We have been advised to “move away from these unsupported versions of Joomla as soon as possible.”

Why not update to a more recent Joomla version?

Because of extensive platform changes that have taken place between the current and earlier versions of Joomla, updating to a recent version of Joomla would not be a simple, automated process, but tantamount to creating a new site from scratch. The cost of rebuilding in Joomla would be about the same as rebuilding in Drupal.

In addition, while current versions of Joomla are more robust and secure than the 1.5 and 2.5 versions, HCC has studied and tested a number of platforms, and Drupal presents as the best solution to our clients’ current and future needs. Key benefits from a development perspective include:

  • Security updates are timely and easy to apply
  • Drupal is highly configurable and offers many free plugins that further extend its functionality
  • The large, thriving Drupal developer community assists in creating updated documentation and vital resources for website builders

Please contact us for further information or to let us know how we can help. 

Screenshot of Drupal display when adding an image to a web page

Many researchers come to us with a particular website challenge: They have spent the time and money to develop a website for their project, study, or lab, but over time, find themselves unable to update it.

An outdated site can reflect poorly on the site’s owner, particularly when it is a researcher who is trying to communicate about the cutting-edge research occurring in their lab or center. An outdated site can also cause study participants to question the study’s reliability and possibly their own participation.

To ensure Health Communication Core (HCC) clients don’t find themselves unable to update their sites, we use a platform called Drupal to build websites.

Why Drupal?

Drupal is a widely used, open-source, free platform that has an easy-to-use content management system for updating websites. We find it is a key component of our flexible, cost-effective website solutions.

Download our free Drupal guide

While Drupal’s user-friendly interface is easy to learn, it’s helpful to have a guide to reference when updating a site. If you have a website developed with Drupal, download a PDF of our guide to make your site updates easier. If your site was developed with a different platform (such as Joomla), contact us for a different guide and/or assistance.

And, of course, we are always available to assist in updating your site and to answer any questions. Some researchers prefer to contract with us to handle their site updates and find it is an easy, low-cost way to ensure their site is up to date.

Photo of Dr. Nancy Lin's metastatic breast cancer study's retention newsletterAs Nancy Lin, MD, clinical director of Dana-Farber Cancer Institute’s Breast Oncology Program, prepared to launch the Longitudinal Cohort Study of Patients with Recurrent Metastatic Breast Cancer in 2010, she reached out to the DF/HCC Health Communication Core for help creating a more participant-friendly name and a study newsletter that would “give back” to the patients who enrolled.

We worked with Dr. Lin and her team to develop a communication strategy based on the unique characteristics of the study’s participants—women and men with metastatic breast cancer. The strategy guided our creation of a study name and a newsletter to achieve her goal of giving back to the EMBRACE community. More than 500 participants have joined the study since it began.

1. Finding the right name

Goal: Dr. Lin wanted the study name to convey warmth and affirm participants’ important contributions.

What we did: HCC’s naming process involved the whole creative team in many rounds of individual and group brainstorming. We rejected many names, others evolved into new ideas, and ultimately some emerged as possible winners. After several rounds of internal vetting, we presented the most promising options to our client.

EMBRACE (Ending Metastatic Breast Cancer for Everyone) was Dr. Lin’s immediate choice. “The word ‘embrace’ reflects the study’s spirit and intent in many ways,” she later wrote to participants. “The study embraces its participants as collaborative research partners. This study is based on human connection, and we thank you all for connecting with us. Each person involved in the study shares the same goal. By participating in this study, you are making an invaluable contribution to the future of science.”

2. Building connection

Goal: Dr. Lin’s research protocol included a newsletter for study participants to “give something back to participants—study news, a sense of the EMBRACE community, resources, updates on new metastatic cancer research, and information about clinical trials,” she wrote in its inaugural issue. The study’s consent form allows patients to indicate if they would like to receive periodic study newsletters. As people enrolled, research coordinators began receiving eager questions about when the first issue would be available.

What we did: HCC began working with Dr. Lin on the first issue, and continues to produce two issues each year. Each one begins with a planning discussion to choose a theme (for example, clinical trials or palliative care) and to outline its content. HCC then interviews the appropriate DFCI staff or other experts, writes and designs the issue, then finalizes it for IRB approval before printing it.

3. Incorporating retention messages

Goal: Effective study newsletters provide information that is interesting and relevant to the study’s participants. Content should also incorporate retention messages that help study participants feel engaged, valued, and confident that they are making a difference.

What we did: Here are some examples of how the EMBRACE newsletter supports retention:

  • Demonstrate study progress: Each issue includes updates on progress toward the recruitment goal. Other news includes recently published research articles based on study data, conference presentations by its investigators, and media coverage (with links when possible).
  • Affirm the value of their contribution: Altruism is a primary driver of research participation. A letter from Dr. Lin in each issue thanks participants and lets them know how they are contributing to scientific advances.
  • Make it personal: Demonstrate the dedication and passion of the PI, and the warmth and friendliness of the research team. The EMBRACE newsletter profiles staff members as well as other people who are involved in participants’ care, support, and research.
  • Create a sense of community. Each issue includes a recruitment update and infographics of data relevant to the issue’s theme—for example, how many clinical trials participants have taken part in and which tumor subtypes they have. The first issue presented the results of a global study of more than 1,300 metastatic breast cancer patients in 13 countries.
  • Contribute to their knowledge: Many patients are eager to learn as much as they can about their disease or scientific advances that are being made. EMBRACE provides useful, understandable information that contributes to their knowledge and understanding of metastatic breast cancer.
  • Identify resources: Most patients are overwhelmed with information early in their treatment journey, when they may be too stressed to process it all. Different resources are helpful at different times. DFCI offers more than 20 resources for its patients, from acupuncture to financial assistance. EMBRACE highlights a few at a time so they can be noticed.

4. Make it a pleasure to receive and read

Goal: A newsletter won’t be effective if recipients don’t pick it up, open it, and read it. Content and design are equally important for engaging and informing readers.

What we did: Our communication strategy and the fundamental communication principles of “clear and simple” guided development of the content, layout, and graphic design.

  • Content: Sentences, paragraphs, and articles are short. The content is written with a warm, caring “voice” and at a low literacy level. Even readers who are well-educated will appreciate content that is easy to understand. We provide links for additional information but don’t assume everyone can or wants to go online, so phone numbers are provided too. Each four-page EMBRACE newsletter typically includes 6-8 articles. Some are briefer than others, but none are lengthy.
  • Layout: The newsletter was designed to appeal to the EMBRACE cohort and invite them to spend time with it. A critical first goal was simplicity, order, and ease of access. The type is easy to read and there’s lots of white (empty) space to avoid looking cluttered or crowded. Articles begin, continue, and conclude in predictable places. Photographs are carefully selected to support the text, then sized and placed so they gently vary the structure of the pages.
  • Typography and color: The overriding goal is making sure that the audience understands that the newsletter is serious and sincere, and that the content deserves their attention. A large “banner” was designed for the first page to establish a unique EMBRACE character. Each issue has a distinct color palette, but all of the colors fall within a similar spectrum.

View EMBRACE newsletters (downloadable PDFs):
Issue 1
Issue 2
Issue 3
Issue 4
Issue 5
Issue 6
Issue 7

YES Health logo

The goal of Dr. Lisa Iezzoni’s PCORI-funded research project, “Persons with disabilities generating quality metrics to inform integrated care,” is to develop quality-of-care measurements that reflect and respect the lived experience of people with disabilities, and to use these metrics to improve quality of care received by people enrolled in One Care, a Massachusetts demonstration project.

Potential study participants either have significant chronic physical disabilities or a mental health diagnosis with impaired functioning in activities of daily living (ADLs or I-ADLs), and some may have a mental health diagnosis secondary to a physical diagnosis. They are low-income and live in the community (not in nursing homes), and are diverse in age, type of disability, educational status, ethnicity, and where they live across the state.

Naming

The study needed a participant-friendly identity and selected YES Health: Your Experience, Speak up for better health care from a roster of naming options proposed by HCC because it is empowering, positive, and explicitly states the study’s call to action.

Website

The study also needed an accessible website that, in combination with other communication channels like phone and email, could help collect participant-generated data on quality-of-care issues and create a community of study participants advocating for change.

To meet the needs of the site’s visitors, content needed to be easy to read and at a low-literacy level, accommodate a short attention span, and be concrete and action-oriented. It also needed to be helpful, providing prominent guidance on how to use the site (supportive messaging, frequent prompts, and easy access to additional support) and how to contact study staff.

Visually, it required clean design and simple organization, a clear and readable font, colors with strong contrast, and easy-to-select links. Photography was used to convey a sense of community and reflect diversity of culture and mobility, to provide cues to invisible disabilities.

Accessibility and technical requirements

Before we began building the site, HCC worked with the study team to develop a detailed description of the website’s technical needs to determine the best way to meet those needs efficiently while providing the most user-friendly site possible. Features that maximize the site’s accessibility included:

  • “Skip to content,” “Skip to main content,” or “Skip navigation” links
  • “Return to top” or “Next” prompts on scrolling pages
  • Options to view the site as text-only with no images (i.e., users can dynamically switch templates)
  • Alt text for all non-text content
  • Easily clickable link text
  • No blinking or flashing text or graphics
  • Consistent placement from page to page

A text-only comment form provides participants with an online option for reporting their experiences with One Care providers. After being submitted, responses are emailed to the dedicated study email address and are identifiable via participants’ unique IDs.  The website also encourages participants to provide feedback via other communication channels based on their personal preference, including phone conversation with study staff or personal email to the study email address.

Close up of a person's hand holding pen and taking a survey

The Neuro-Oncology Nursing Network (NONN) is a global community of nurses and others who are interested in collaboration, sharing knowledge, and peer support to advance the care and survivorship of pediatric neuro-oncology patients.

The network began a few years ago as the NeuroOnc Nurse listserv. It is being relaunched by Christine Chordas, PNP, Dana-Farber/Children’s Hospital Cancer and Blood Disorders Center and other pediatric neuro-oncology experts. The Health Communication Core is assisting with its development and technology.

More than 170 nurses from around the world are already part of this group. To better understand their informational needs and communication preferences, HCC invited them to complete a brief online survey.

Twenty percent of the group’s members--from 13 states in the US and from Sweden, Australia, Canada, and the UK--responded. Graphs of select data are provided below.

What did we learn from this global group of pediatric neuro-oncology nurses?

Informational needs

Nurses most often turn to their colleagues for information. This underscores the value of a digital community of colleagues practicing in diverse settings.

Journals are also useful sources of knowledge, and 88% of respondents would like to be able to access journal citations on a website. NONN members can use the network to share and access useful, relevant articles.

The topics that were of of greatest interest were:

  • Family-centered care and the psychosocial impact on child and family
  • Patient and family needs after discharge
  • Patient and family education

Mentoring and being mentored were suggested as additional functions of the network.

Information and communication technology preferences

Desktop computers (72%) are the preferred device for connecting to colleagues and information, but in terms of actual use, 75% of respondents also use smart phones and 69% use laptops.

Email was overwhelmingly the preferred technology for discussion (85%) but 78% also indicated they would like access to information via a secure website. There was little interest in using newer technologies like Skype and Google Hangouts, collaborative technologies such as Google Docs/Drive, or social networks like Facebook or LinkedIn.

How will we use this information?

We wanted to confirm that email was the right format for the group’s discussion. Having done that, we are sharing the survey results among the group to help create a sense of community, and more broadly to increase awareness of the NONN (new members are welcome and can join online at http://research4.dfci.harvard.edu/mailman/listinfo/neuronurse).

Identification of the most popular topics can help guide participants in launching discussions and sharing information.

The high level of interest in a website helps create the case for identifying the necessary resources to develop one, and is being explored.

Response data (partial)

If you have a question about pediatric neuro-oncology, where do you seek information?

Graphy showing response data about where nurses' seek information

How do you stay informed about new developments in pediatric neuro-oncology?

Graphy showing response data about how nurses stay informed

Please check the topics below that are of interest to you. (Please check all that apply)

Graphy showing response data about nurses interests

Please suggest resources that would be helpful to you if they were available online. (Please check all that apply)

Graphy showing response data about what resources nurses would find helpful

What devices do you use to connect with others and access information?

Graphy showing response data about what devices nurses use to connect to others

Which device do you prefer to connect with others and access information?

Graphy showing response data about what devices nurses prefer to use to access information and connect with others

Which would you prefer for posting and discussing questions, presentations, news, etc.? (Check all that apply)

Graphy showing response data about which means nurses would prefer for posting discussion questions

Contact us for more information

Christine Chordas, PNP, Department of Pediatric Oncology, Dana-Farber Cancer Institute (Christine_Chordas@dfci.harvard.edu)

Catherine Coleman, Assistant director, Health Communication Core, Dana-Farber Cancer Institute (catherine_coleman@dfci.harvard.edu)

Pages