Syllabus

HCOM506 Online Consumer Health, Fall 2009, 2 credits

Location, time, and dates: Sackler 853, 5:30-8:30 p.m., November 3 – December 15, 2009

Course Director: Lisa Gualtieri, PhD, ScM

Contact Information:

• Email: l.gualtieri@tufts.edu
• Phone: office: 781-861-7373, cell: 781-330-9456
• Web site: http://lisagualtieri.com
• Twitter: http://twitter.com/lisagualtieri

Objectives:

• Understand how healthcare consumers locate and use health Web sites and the factors, such as health literacy skills, that influence their online behavior
• Learn the techniques to develop and use personas to drive a design initiative
• Evaluate the strengths and weaknesses of an existing health Web site
• Develop policies for moderation of user-generated content
• Design a health Web site and justify the design decisions

Description: Health Web sites are used by patients and their families for education and support, with 61% of US adults looking online for health information. There are “branded” Web sites, such as WebMD.com, Wikipedia.com, diabetes.org, medlineplus.gov, CDC.gov, and NIH.gov, and there are countless sites started by patients, doctors, and organizations. This course will cover how to design health Web sites, how user-generated content is solicited and used, how social networking is supported, and how Web 2.0 technologies are impacting Web site design. In this course, students will design a health Web site for a disease or condition of their choosing, and will learn how to conduct formative and heuristic evaluations of health Web sites. Due to poor information literacy and health literacy skills, healthcare consumers may not know the accuracy, reliability and biases of health sites. There are potential consequences when erroneous or misleading advice is taken or when professional treatment is not sought. Thus understanding how to design health Web sites and how patients use the Internet for health are critical for healthcare professionals.

Attendance: Students are expected to attend and participate in all class sessions. If it is necessary to miss a session, please notify the instructor in advance to make arrangements to make it up.

Assignments: For each class meeting, you will have readings and an assignment. Please do all readings in preparation for the next class meeting so you can participate fully in discussions. All assignments should be sent by email before the next class starts. Many assignments will be part of your final paper. The final project is a paper and presentation about a health Web site for a topic of your choice. For this, you will conduct a needs assessment and competitive analysis, consider the technology, design, content, and marketing, and create a Web site. A template is available for your final paper. Guidelines are available for your presentation, which will be given on the last day of class.

Grading Policy

Weight
20%	Class participation
30%	Assignments
50%	Final project: paper and presentation

Week 1: November 3, 2009

Class meeting:

The first week’s session will start with an overview of the course, including expectations for participation and assignments; and then an introduction to online consumer health and what it encompasses, in particular, who is going online and why, and the wealth of options available in terms of purpose, technology, design, content, and sponsor.

Healthcare consumers seeking information or support go directly to “branded” Web sites (such as WebMD.com, Wikipedia.com, diabetes.org, medlineplus.gov, CDC.gov, and NIH.gov), go to symptom checkers (type “symptom checkers” into search engine for examples), or conduct searches. Searches are done using general and specialized search engines:

• General search engines include Google, Bing, and others
• HONcode search for patients http://www.hon.ch/HONsearch/Patients/index.html
• Healia search http://healia.com/
• Health librarian http://www.healthlibrarian.net/
• List of search engines for health http://www.searchengineguide.com/pages/Health/index.html
• Tufts Medical Center Health Information http://www.tuftsmedicalcenter.org/HealthInformation
• And others

We will discuss in class the problems that can arise with how people search, which results they select, how they use the results, and how they communicate with their providers. The Doctor as the Second Opinion and the Internet as the First, http://lisaneal.files.wordpress.com/2009/02/alt12-gualtieri1.pdf, discusses how patients use the Internet and how they communicate (or don’t) with their physicians. Improving Patient-Physician Communication about Internet Use: Why “Don’t Ask, Don’t Tell” Doesn’t Work, http://www.medicine20congress.com/ocs/index.php/med/med2009/paper/view/307 (scroll down), is about the cost of the lack of communication between patients and providers and proposes a solution (as yet untested).

Assignments:

1) Select the disease or condition, including wellness and prevention topics, that you want to work on during the course, such as breast cancer, weight loss, diabetes, or Alzheimer’s disease. It can be as broad or narrow as you want, but, especially for a broad topic, consider narrowing it based on who you are trying to reach; for example, for Osteoporosis and Osteopenia, you might focus on young women, or for SIDs you might focus on how people with professional or personal relationships communicate with a parent who lost a child. You will use this topic throughout the course for many assignments which will be part of your final project.

2) Read Susannah Fox, The Social Life of Health Information, http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx. She found that, in 2009, “74% of American adults go online, 57% of American households have broadband connections, and 61% of adults look online for health information.” Write 3-4 paragraphs answering

• What are the primary benefits and risks to patients and their families who use the Internet for health?
• What surprised you most from the report?
• What did you learn that is pertinent to your topic or target population?

3) For the disease or condition you selected:

1. Conduct 9 or more searches using the suggestions above (in class meeting) or ones of your choosing. Try at least 3 “branded” Web sites, at least 3 general search engines, and at least 3 specialized search engines. Document which ones you select and why you selected them.
2. Which search terms did you use and did you vary the terms to get different results?
3. What type and amount of information did you get for each search?
4. From your searches, look at some of the resulting Web sites. In particular, note whether a Web site provides information and/or support, how it is “branded”, any seals or other indicators of credibility, any information about who created the content and when, and if the Web site uses text, graphics, audio, and/or video.
5. Summarize what you learned about the search process and the results.
6. What are some of the difficulties someone might have in locating information on your topic due to spelling, multiple names, or other issues?
7. Optional: did your searches locate only educational Web sites or support ones as well? Why do you think this is?

4) Optional: peruse lundberginstitute.org to learn about the upcoming guest lecturer.

Week 2: November 10, 2009

Class meeting:

George Lundberg, MD, is our guest lecturer. His Web site is at lundberginstitute.org, where his bio calls him a “’pioneer’ of the medical internet”. He will talk about the history of Online Consumer Health and is open to answering any and all questions.

We will review your search assignment and the Pew report. The topics for the rest of the class are needs assessments and personas: what are the techniques for learning about the target users of your health Web site; when and why would you use these techniques; and what is the role of health literacy skills in how people locate and use health information.

Assignments:

1) Read about persona development in Designing Usable, Self-Paced e-Learning Courses: A Practical Guide, http://elearnmag.org/subpage.cfm?section=tutorials&article=24-1,which is written for e-learning but is applicable to health Web sites. The portion on personas will help you with next part of the assignment. We will discuss heuristic evaluation later in the course.

2) Develop 4 research-based personas for your Web site. Document all steps below.

A) Develop a prioritized list of your target audiences

1. List the target audiences for your Web site; this might include patients, patients’ families and friends, caregivers, healthcare professionals, and funding sources
2. Refine your list if subgroups have specific needs (such as separating patients into newly diagnosed patients and patients undergoing treatment)
3. Prioritize the list in A.2 based on their role in the success of your Web site and provide justification
4. Select the 4 most important groups in terms of your goals

B) Make a list of relevant characteristics for your personas

1. Required characteristics are name, age, gender, and job
2. Descriptive characteristics you may want to include, if they will be relevant, are education, reading level, family situation, national or cultural identity, religion, technology access, and digital literacy skills
3. Health-related characteristics you may want to include are disease(s), any constraints or disabilities introduced by disease(s), and health literacy skills

C) Develop 4 personas

1. For each group from A.4 and using the list from B, develop a persona representing a prototypical person in each group
2. To add reality and dimension to the personas, locate a picture for each
3. If you have characteristics you identified in B that are not sufficiently covered by your 4 personas, then develop an additional persona

D) Develop a realistic scenario for each persona

1. Walk through a day in the life of each persona to show his or her health information-seeking behavior
2. What is the trigger for the persona to go online
3. How does the persona locate your Web site
4. How does the persona use your Web site on the initial visit
5. Why would the persona return to your Web site
6. Did your persona in any way participate, contribute to, or become a member of your Web site
7. How does your Web site provide education, support, or behavioral change to your persona

E) Design implications

1. Based on what you learned from the needs and constraints of the personas and their behavior in the scenarios, what are the design implications for your Web site?
2. Justify by referring to your personas and scenarios.
3. Are there significant differences in the needs of the groups from A.4 and how will you address these differences?
4. Optional: develop a story for one of your personas that would be used on the Web site as a testimonial, part of a Q&A, or in a post in a blog or discussion forum.

F) What else do you need to know about your target users

1. Do you believe the 4 personas accurately (enough) portray prototypical users and do you need to confirm any or all of the information in the personas or scenarios
2. After considering the design implications from personas and scenarios, what do you still need to learn from a needs assessment carried out through focus groups, surveys, or interviews and why?
3. Write 1-2 pages in which you consider the options available (the use of existing data and conducting surveys, focus groups, and interviews) and argue which one(s) you will use and specifically how they will be planned, administered, and analyzed.

Week 3: November 17, 2009

Class meeting:

Our guest lecture is by Susan Harrington, who is the assistant director of communications at the Boston Public Health Commission, the city’s public health department. From infectious disease to violence prevention and nutrition, she works to promote the work of the Commisison’s 33 program areas. Using a combination of traditional and social media, Susan designs targeted social marketing campaigns to prevent disease and protect the health of Boston’s residents. Susan is a graduate of the University of Notre Dame. More information is available at: www.Facebook.com/HealthyBoston, www.YouTube.com/BostonPublicHealth, www.Twitter.com/HealthyBoston, and www.bphc.org. Susan’s slides.

The class will be on how to conduct a competitive analysis. The only way a Web site can be successful is if it is different or better than anything else available so it is important to know what else is out there. In addition to covering how to conduct a competitive analysis, we will look at accreditation processes, top ten lists, and awards for health Web sites.

Assignments:

1) Conduct a competitive analysis (template available). Locate five “competing” Web sites (you may already have them from your search assignment). Include the url and screen shots of any relevant or significant features. Answer the following for each Web site:

1. Who is the target audience(s) in terms of age, role, language or culture, information literacy, and health literacy?
2. How professional is the design? How clear is the purpose of the site?
3. How usable does the site seem in terms of layout and navigation?
4. What are the expert-generated components of the site: text, graphics, audio, video, ask the expert, etc. Is material dated and the author specified?
5. What are the user-generated components of the site: discussion forums, blogs, user-submitted videos, wikis, social bookmarking, ratings, reviews, etc.?
6. How are the above user-generated components managed, organized, updated, or moderated?
7. What would you estimate is the reading literacy level of the materials on the site?
8. Are there indicators of branding, accreditation, sponsorship, advertising, or clinician involvement in the site?
9. Is there an advisory or editorial board and what is their role?
10. Can users register and develop profiles and, if so, do they include any information about the disease or condition or about site participation levels, and what does registration provide in terms of any personalization or options (such as a newsletter or email updates)?
11. What can you determine about how many people are using or are registered users of the Web site?
12. Is there a presence beyond the Web site on twitter, Facebook, or other social media?
13. What are the overall best and worst features of the site?

2) What did you learn from the competitive analysis about how to make your Web site different or better? Start thinking about how you will answer the above questions for your own site.

Week 4: November 24, 2009

Class meeting:

Guest lecturers are Dave deBronkart (aka e-Patient Dave), http://epatientdave.com/about-dave/, and Dr. Danny Sands, http://services.bidmc.org/Find_a_doc/doc_detail.asp?sid=41414547464148, speaking about patient Internet use and patient-provider partnerships.

We will look at how stories are used in health Web sites and are part of posts in blogs and discussion forums. They vary on many dimensions:

• Purpose: Promotion, support, catharsis
• Length: Some are long and detailed while others are vignettes.
• Author: The author may not be identified at all, an initial or first name might be used, or real names and locations might identify the author. In some cases the author might be a celebrity.
• Editing: Text ranges from unedited in the first person to edited text in the third person.
• Accuracy: Are any fabricated? Exaggerated? Verifiable?

The focus of the rest of the class is on the technologies, including Web 2.0 and social media, that support health Web sites, and the different types of expert- and user- generated content that is needed to develop and sustain a health Web site.

Assignments:

1) Find some examples of stories that are particularly compelling, persuasive, or supportive that fit into your topic. Create some stories that you can use on your Web site. How do they fit in the above dimensions (purpose, length, etc.)? How would you use them, or encourage their creation by site users, as part of your Web site with what anticipated benefit?

2) Determine which technologies and types of content will be incorporated into your health Web site (template available). Determine what you want to use, how it will be obtained, created, managed, updated, and moderated, as appropriate, and provide justification for your selection:

1. Expert-generated content: text, graphics, slide show, audio, video, etc.
2. User-generated content: discussion forums, blogs, user-submitted videos, wikis, social bookmarking, ratings, reviews, etc.
3. Any presence supplementing the Web site on twitter, Facebook, other social media, a newsletter, email notification of updates, etc.
4. Registration
5. Presence awareness or statistics about use
6. Advertising or sponsorship
7. Other components?

Week 5: December 1, 2009

Class meeting:

Our guest lecturer is Diane Aronson, Past-President of the Road Back Foundation and a Consumer and Patient Representative for the FDA.

We will learn about the range of health Web site designs and what heuristic and formative evaluations are and how to conduct them. Evaluation increases the likelihood that the implementation of the Web site is successful, so it is an important skill!

Formative evaluation feedback is generally in three areas: appeal, usability, and effectiveness at accomplishing the desired goal. Formative evaluations can be conducted on concepts, paper prototypes, screen mock-ups, a working prototype, or an alpha release, with the goal of using the feedback to improve the design at the earliest possible stages when the cost of making changes is lower. We will conduct hands-on formative evaluation using students as evaluators and students in the roles of personas we define. Slides from class.

Heuristic evaluations are conducted by experts and focus on: How does the site meet the needs of first time visitors; how does the site meet the needs of repeat visitors; and is the site appealing, usable, and effective for the intended users?

Assignments:

1) Read Formative Evaluation: A Practical Guide, http://elearnmag.org/subpage.cfm?section=tutorials&article=25-1, which is written for e-learning but is applicable to health Web sites.

2) Develop an evaluation plan for your Web site, determining:

1. What are your goals pertaining to appeal, usability, and effectiveness at accomplishing the desired goal
2. The stages at which you will test (e.g. with a mocked up home page or with an early release of the site)
3. The number and demographics of the people you will test and how you will recruit and compensate them

3) Design: Using your personas and scenarios and the resulting design implications; your technology and content decisions, and building upon your assessment of what your competition does well and poorly, plan the design of your site.

1. Mock up a home page, using paper or any tool you are comfortable with, to show the basic layout of the elements including graphics. For example, if you want to have a picture of a sleeping person, you can write “sleeping person”, you can draw or photograph a sleeping person, or you can use an existing photograph of your own or from another site. You can use the guidelines available at http://www.usability.gov/pdfs/chapter5.pdf if you want but for this assignment you don’t need to be that systematic about the design. This does not need to be polished but a good indication of what you are planning.
2. Supplement your mocked up home page with justification about the design by answering the following questions:
   1. How does your design meet the needs of first time visitors?
   2. How does your design meet the needs of repeat visitors?
   3. What makes your site appealing for your intended audience(s)?
   4. Is your site usable for your intended audience(s)?
   5. How is your site effective at helping your intended audience(s)?
   6. Which principles in the HONcode questionnaire does your site comply with?
   7. Optional: Using a visual tool like Visio or PowerPoint or drawing on paper, develop an information architecture (or site map) for your site that shows the highest level (the home page) and where a user can go from there. For example, “About Us” is a link that goes to a page of text and “Register” goes to a form with required and optional fields.

Week 6: December 8, 2009

Class meeting:

Formative evaluation of student designs: get feedback on what works and what you can improve and why. Guest lecturer not confirmed.

Assignments:

1) Prepare your final presentation. You will have 15 minutes to present your topic and your Web site. Focus on presentation style (warmth, energy, and authority), presentation materials (what visuals enhance your presentation and make it memorable or more understandable), and compelling content.

2) Final paper: Start writing your final paper. Please send me a draft at any point if you would like feedback. Use this template, which also has presentation guidelines. As I mentioned in class, your final paper should be roughly between 20 and 25 pages including screen shots.

The example presentation and final paper I showed in class are from Pam Ressler – note that these are just to provide an example and the template is different this year.

Week 7: December 15, 2009

Class meeting:

Final project presentations

The future of online consumer health: mobile apps

Assignments:

Final papers are due on December 22, 2009.