Posts filed under ‘online health communities’

End of Life Decision Making

End-of-life decision-making is an increasing pervasive topic that has personal, political, legal, and, of course, medical implications. George Lundberg, MD said that “every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide. To achieve that, patients and physicians must discuss the options for managing an upcoming death.” Atul Gawande, MD wrote in Letting Go: What should medicine do when it can’t save your life?, “But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?” Gawande told about La Crosse, Wisconsin, where, by 1996, 85% of residents who died had written advanced directives.

La Crosse is the exception. Rational, informed decision-making is difficult; most people don’t know much about advance directives and don’t have good resources to learn about the many facets of end-of-life decision-making. Enter Mardi Coleman, a Master of Science candidate in Health Communication at Tufts University School of Medicine. With a background in geriatric mental health and an interest in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe, she designed a end-of-life decision-making website in Online Consumer Health. The overarching goal of the website, as described in her final paper, is “to provide information that allows users to make informed end of life legal, medical treatment, and service decisions,” specifically to:

Help users clarify their understanding of their beliefs and values regarding end of life, treatments, and services, including that beliefs and values are situational and change over time.

Provide the types of information users need or want regarding advance directives, life-sustaining treatments, and services that extend or support the end of life in order to make informed decisions.

Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that is relevant across many stages of decision-making.

February 28, 2011 at 9:44 pm 5 comments

Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women

I gave a talk at the MA Department of Public Health this week and started with a game called Hot or Not. I showed screen shots to get people’s instantaneous reactions, my point being that people leave a site if is not appealing. One of the sites that was considered very “hot” was Lu Xing’s beautifully-designed home page from her final project in Online Consumer Health at Tufts University School of Medicine.

Lu, a graduate student at Emerson College working toward a master’s degree in Health Communication, designed a site, “Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women” that was motivated by “the fragmented information that pregnant women have received about the nutritional value and health risks associated with fish consumption resulted in confusion and misperceptions.”Lu’s aim for to “create a credible and professional website that provides clear fish consumption advice, fish coupons, and fish preparation skills for pregnant women, to help them make informed fish consumption decisions, so that they can have a smart and healthy baby.” Her paper describes the steps she took to design her site. Lu and I welcome your feedback on her well-written and insightful final paper.

January 9, 2011 at 1:58 am 2 comments

A Website for the Management of Narcolepsy

Students in Online Consumer Health at Tufts University School of Medicine design health websites for a topic of interest to them or redesign websites for real organizations. Ellen Langhans, a graduate student at Emerson College working toward a master’s degree in Health Communication, chose the management of narcolepsy for her topic. Her goal was “to create a site for people who live with narcolepsy – both patients and their loved ones alike – to help them manage the disorder,” to provide timely information, and to help site members learn from and connect with each other to thrive. Her final paper details the process she went through, which included the development of four personas and a competitive analysis of four websites: two for narcolepsy, Narcolepsy Network and The Stanford Center for Narcolepsy, and two for diabetes management that had similar goals, Diabetes.com and Take Action. Ellen and I welcome your feedback on her excellent and comprehensive paper.

December 28, 2010 at 11:19 pm 1 comment

Better Health Websites through Better Design: Insights from Tania Schlatter

I interviewed Tania Schlatter, one of the best designers I know and a guest-lecturer for Web Strategies for Health Communication (pictured to the right), about color, imagery, and other aspects of health website design.

Lisa: How is the design of health websites different than for other types of sites?

Tania: The design of any site goes back to the goals of an organization and what people coming to a site need. Healthcare consumers can be overwhelmed and are in need of highly credible information. While every individual has different issues, healthcare consumers are similar in their need to conduct research and apply what they find to their situation.

Lisa: What are some examples of successful sites in your opinion?

Tania: I like Patientslikeme and WegoHealth in part because they use different models to help people manage their health better. The new Mass General site puts information first and has a navigation scheme that does a pretty good job of making that information findable. Healthcare websites overall do not have inspirational visual design, although AthenaHealth is very nice.

Lisa: Why aren’t health websites inspirational? What would happen to consumer health if they were?

Tania: From the practical perspective, healthcare is about people, and it is very hard to show health-related vignettes that are real. Health-related stories and imagery slip into being sentimental or sanitized, neither of which are inspirational. No one wants to show or tell the real moments in healthcare. There are privacy issues, and anything staged looks and sounds that way.

Change – and inspiration – is only going to come from consumers. They own their stories, fortunately. I have a friend who is a breast cancer survivor and who has ovarian cancer. She posts photos of herself on Facebook. She is incredibly beautiful and strong throughout it all – truly inspirational. Fortunately her images are private, and they should stay that way unless she decides otherwise. I hate to imagine patients selling their stories to help any site – other than one that they control or that is truly for the common good – look good.

Sites that provide accurate information in a findable way with enough depth and context to be helpful are doing what they can, given the circumstances. There are a lot of content-rich heath-related sites out there. More can be done on these sites to improve visual and information presentation hierarchy. There are a lot of exciting developments that can help. Designers now have many more fonts available to use (see typekit.com) and HTML 5 and CSS3 are enabling more layout options and greater control. On information-rich sites typography and layout can be designed to highlight higher-level information visually, break up detailed information and provide video that aid in the explanation of content.

Lisa: Speaking of imagery, many sites use stock images of smiling people, yet the sites are often about serious diseases. What makes imagery appropriate for a health site?

Tania: Appropriate imagery related to health helps inform, so while not visually appealing, photos that show what the text is describing are appropriate. These images need to make sense visually for the audience, so it is important that they are accurate and informative. One way to deal with photos that are informative but not so nice to look at is to use them small and allow the user to click to see them larger.

Photos of caregivers/providers are appropriate and helpful, both as headshots with biographical information and showing people in their working situations. Showing healthcare workers on the job can be an effective way to help site visitors know what to expect from an unfamiliar situation. For example, seeing practitioners with a patient in the care setting can help people imagine themselves in the situation and manage anxiety about an upcoming visit. Patients need not be shown – their back can be to the camera – but it is great to see both the provider in action and the environment. Sometimes organizations are resistant to using pictures of staff to help set the tone on a website because they do not want to show people who might leave the organization. If the images are used to set a general tone (as opposed to identify specific personnel) then the concern is purely an internal one. Site visitors are not that literal in their reading of photos, and the photos can still be effective.

Lisa: Color is one of the most noticeable things in a site and, I imagine, one of the areas where a designer is dealing with opinions, taste, trends, and recognizable branding both from colors that are associated with companies or with diseases (like purple for Alzheimer’s disease). What is the best way to select colors and a color palette? How does a site color scheme work with advertising? I ask this because I just saw MyDr.com.au where the advertisements are by far the most vivid parts of the home page.

Tania: Color is a tool that helps set a tone and create visual relationships. Color needs to be selected based on strategic goals, not subjective preferences. For example, it is a great tool for helping information-rich sites be more legible and navigable. The BBC Health site uses color to consistently distinguish navigation from content, which both looks great and helps the user.

If an organization has colors that it uses in non-web communications, the designer and client team need to consider if it is desirable to link the website to other communications visually. If it is, then using the same color palette is an excellent way to do that.

MyDr.com.au looks like it is trying to balance the need to convey useful information with the need to make money from advertisements. If the site is more colorful the ads will be less prominent, which could be a problem for the site’s bottom line. The site’s use of blue with a little brown is consistent which helps the user distinguish editorial content from promotions and which may help visitors focus on content.

Lisa: When do features like the slideshow used by WebMD and countless other sites, or the less ubiquitous Ask the Expert column, work well for a site?

Tania: Slideshows are a way of marketing or conveying topical information. They don’t work for conveying important content because it is unlikely that a user will see all the slides. Ask the Expert can be valuable especially when a qualified person provides answers. But is all comes back to site goals.

Lisa: Describe the process of defining clear goals.

Tania: Goals come down to knowing who you are speaking to and their needs. Site owners need to know this, segment their users, and then use all the tools they can – from site analytics to in-person usability testing to understand how effective their site is. My biggest recommendation is to be close enough to users to know if you’re hitting the mark through processes like regular usability testing and an advisory council used to help inform feature or other strategic decisions a few times a year.

Lisa: I know from experience how few organizations actually do that. Is that your experience as well?

Tania: There is a lot of resistance to having direct contact with site users. Communicators like the idea but many shy away from doing it. It is uncomfortable to open your work to the people who use it. I think people worry that if they knew what their users wanted they would have to provide it, but that is not necessarily the case. Sometimes knowing what people prefer can help even if preferences are not in line with organizational goals. I was working on a logo redesign for an established organization. Designs were down to two options. One was modern and cutting-edge looking. It captured how the organization said they wanted to be perceived. The other was traditional – precisely what stakeholders said they wanted to avoid. However, the traditional design was favored by the majority of the audience – people who were considered to be “users” of the logo. We knew that going with the traditional logo would be a mistake for the organization, however there was significant pressure to go with the preferred option – it was what people liked. The bottom line is that you need to know what people like and why. When we thought about why the cutting edge logo was off-putting we realized that the organization had undergone several re-orgs in a short amount of time. People were not interested in change. They wanted stability, which is what the traditional logo represented. Once we figured out that change fatigue was behind the preference, we could push the cutting-edge logo with confidence because we could address their concerns in other ways. It takes some work to use user input in a way that is truly strategic. The thought is overwhelming to people who may feel that they have too much input already. It’s ironic since it’s the most helpful thing they can do.

Lisa: Can participatory design be successful, when users are involved from the start in the design?

Tania: Absolutely, it’s a great way to use people who are your audience or to get stakeholders directly involved in design issues. But again, having people participate in the process does not mean that they are designing the end result. Participatory design is a method for acquiring an understanding of end users’ (or stakeholders) situations, motivations and goals to inform the design, not create it.

Lisa: We worked on a Latino Alzheimer’s caregiver site together where there was significant expertise among the team but no representative users until the evaluation phase. Is that typical?

Tania: Yes, it is hard for people to understand that they don’t know their customers, or that they can learn more by having them closely involved.

September 25, 2010 at 11:04 pm 6 comments

Sukar Ala Sukar- A Website Design for Diabetes Education and Support for Saudi Arabian and Middle Eastern Children

Sukar Ala Sukar is a website for 4th and 5th grade Saudi Arabian and Middle Eastern children to learn about diabetes. Nada Farhat, MD, designed this in my fall course, Online Consumer Health, and she and I revised her project to submit to the 2010 DiabetesMine™ Design Challenge, a competition “to encourage creative new tools for improving life with diabetes”, in the hopes that we would get funding to implement and evaluate the site.

Here is our description: We designed a website to meet the education and support needs of children with diabetes, at risk, or with diabetic family members who live in Saudi Arabia and other Middle Eastern countries or whose families are from these countries. Culture and language (English and Arabic) are embedded in the website design which includes separate areas for girls and boys in keeping with societal norms. The website goals are to increase awareness of diabetes and debunk myths children might have, which are carried out though text, video, games, recipes, and activities. Social media further reinforces education and provides peer support. Our goal is to develop and evaluate the effectiveness of the website with Saudi children in the US and in Saudi Arabia.

To me, this project is fascinating in three ways: the impact of culture on effective design; design of a bilingual site when one language is read left-to-right and the other right-to-left; and how health website design for children is different than for adults. Nada’s final paper for the course addresses many of these through her competitive analysis and research. Our initial answers to the culture question are in the entry. For instance, one way to address cultural norms is to separate the site by gender. Another is to use drawings of people since photographs of girls violate cultural norms. We know that bilingual design can be challenging for languages that are more similar than English and Arabic, such as English and Spanish, especially when one language uses more characters than the other to express the same thing. We also know the importance of localization. And for children’s design we want to be consistent with best practices yet be fresh.

We welcome your feedback.

May 6, 2010 at 8:30 am 1 comment

Online Consumer Health in Jordan: An Interview with Dana Mahadeen

I met Dana Mahadeen, an English Language Instructor at Balqaa Applied University in Salt, Jordan with a background in e-learning. We ended up chatting, not about e-learning, but about how people in Jordan use the Internet for health information. She told me that not all Jordanians use the Internet. Internet use is 18.2% of Jordanians as of March 2008 and 24.5% as of August 2009 according to a different source. I could find no data about use of the Internet for health. Dana told me about health Web sites in Jordan and her own experiences.

While there are health Web sites in Jordan, most are government-operated although there are some private sites. Some of the English language ones Dana knows are http://www.ncd.org.jo/index.php?option=com_frontpage&Itemid=1, http://www.jfda.jo/en/default/http://www.khcc.jo/, and http://www.moh.gov.jo/MOH/En/home.php. She said that there are other sites in Arabic, such as  http://www.6abib.com/, but questioned how accurate their information is. One of the Arabic ones she uses is http://www.sehha.com/. Mostly she relies on American sites like the Mayo Clinic. Dana said that she knew about the Arabic sites because she has a friend suffering from diabetes and cancer. She tries to keep up with the news about these diseases, to understand the conditions better, and to help her friend at the same time. She went on to say that she has used these sites for herself during her pregnancy and when her children are ill.

I asked Dana why she relies on Mayo Clinic’s website instead of the Jordanian ones. She responded, “It is very user-friendly and I guess I just like the site. I have also used WebMD.” I asked if she had heard of anyone writing a blog about their illness, to which Dana responded, “I can’t say I have, but I have heard of people writing about their weight loss.” She went on to say that obesity is a problem there, not to the extent of the problem in the US. They “are seeing more 10+ year old children getting heavier and heavier and I guess we are headed the way of the US. Don’t get me wrong, most Jordanian adults are a bit on the chubby side but not obese. It is a matter of food choices: Jordanian food is naturally rich and, well, fast food is quite popular.”

I asked if heart disease was common as a result of the rich food and Dana responded, “Strange that you should ask. My husband is a Cardiac Surgeon and he is very busy” (40% of deaths in Jordan are caused by cardiovascular diseases, according to Health Minister Nayef Fayez.) To my final question about her own health seeking behavior with a husband who is a doctor, Dana said, “I am always asking my husband questions and I am always looking online. I like to know as much as I can. The Internet is a great tool.”

February 16, 2010 at 9:38 am 4 comments

Stories that Enhance Health Website Design: If It Helped Them It Might Help Me Too

Stories can enhance health websites because they resonate with health information seekers, who find support and encouragement from the experiences of others like them. Two excellent examples are Weight WatchersSuccess Stories and Livestrong.org’s Survivorship Stories. Both sites include extensive libraries of well-written stories about people’s experiences losing weight and surviving cancer, respectively.

Because of the effectiveness of stories in health websites like these, I challenge my Online Consumer Health students to consider how the inclusion of stories can enhance the websites they design in class. In one assignment, they first review the purpose, length, transparency of authorship, writing style, and perceived accuracy of stories on health websites. Then they either write or reuse stories from other websites for their own sites.

In my constant search for examples to use in class, I came across the stories in RediscoverYourGo. I contacted the developer to learn about the planning and design of the website, particularly how the decision was made to use stories.

“I can do anything I want, now. I would say I’m ‘back to normal,’ but I didn’t know ‘normal’ for years. I would say I gained back 15 years or so. It’s really, really good.”

I spoke with Simon Lee, CEO of Lee-Stafford on February 8, 2010. RediscoverYourGo was developed for a medical device company, Smith & Nephew, that manufactures parts for hip and knee implants. On the home page, “stories” is one of 4 tabs on the left and 3 links to stories are featured on the lower right next to “Learn from real patients who have rediscovered what it means to live pain free.” The “stories” tab leads to a list of the replacement products headed by, “Real people who have rediscovered their go.” Each replacement product has story snippets from people who have had surgery to implant that product (example to the left). The story snippets are brief, first-person quotes and they include the name (generally the first name and last initial but in some cases the full name), city, and product, illustrated by a photograph. Rather than use a headshot, many show active poses and look like they were taken informally, not by a professional photographer (in contrast to the posed “after” pictures on Weight Watchers). There is some duplication, with some people appearing in more than one category, presumably because the person has used multiple products. The first person quotes were extracted from a letter or interview with, as Simon said, “100% real patients.”

Selecting a snippet leads to a longer story in the third person about the person’s experience with pain, learning about and contacting the surgeon, undergoing the surgery, recovering, and developing a post-surgery active lifestyle. The header includes more about the person, including occupation, a larger version of the snippet photograph, and a picture of the replacement product. Many of the stories identify the storyteller’s age, and the photographs indicate age as well. Stories are more likely to resonate with someone who identifies with the storyteller, which, in this case, might be because of replacement product, age, or recreational activity. Weight Watchers facilitates this by sorting stories by gender, age, or total weight loss and inviting a viewer to “Read about someone like you”.

The use of stories is “a toe in the water” to create an online community for patients with Smith & Nephew products. What lay behind the use of stories, Simon told me, was the desire to create a “patient ambassador network” to capitalize on patient stories. Often patients with debilitating pain became advocates for the surgeon who “fixed” their problem: they wrote letters thanking the doctors who performed their replacement surgery for giving them their life back and were eager to discuss their outcomes with others.

Simon believes the more open use of social media or forums was not possible because of concerns about monitoring, disclosures and privacy, a concern shared by all the major orthopaedic and spine device companies. Highlighting patient experiences on a website seemed the best alternative.

The overall website design goal was to modernize the brand and create more youthful and non-surgical-looking site as befitting one of the big growth areas: patients 45+. Previously, the primary target audience was 65+. The focus on the new demographic is because a growing number of younger people are seeking partial replacements. The potential exists that they will then become loyal customers to the brand and their surgeon. Simon believes that healthcare is local and that decisions to choose care are “based on who can treat me and where can I be treated.” Furthermore he believes that “educated patients are happy patients and happy patients are advocates for the doctor who ‘healed’ them.”

February 14, 2010 at 1:01 am 12 comments

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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri

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