ARTHRITIS SOURCE
Synthesis of Results of “Interview with Designer”
Goals of the Designer and Implications for Research & Re-Design
Julianne Fondiller, Jennifer Turns, Jake Burghar, Brett Shelton, Scott Macklin
24 January 2000 (Draft)
In order to gain a better understanding of the designer’s intentions with the Arthritis Source, we conducted an interview with the designer, Rick Matsen, on November 15, 1999. Further, we wanted to gather more information that would generate potential research questions for the PETTT team as well as re-design ideas for the D3 team. Below is a summary of Rick’s interview compiled from observations of four researchers, followed by the implications for re-design and research questions.
Goals and Intentions of the Designer
Goal of the Source: Original goal was to provide a “single repository” of arthritis information for many audiences (listed below).
History: The source was originally developed by Rick Matsen in collaboration with Michael Burdett, a systems administrator. Rick claims to see the Source, and learning through the source, as an extension of the educational mission of the university. In fact, Rick pointed out that discussion of the Source is about teaching and learning as much as English 101 is about teaching and learning.
Intended Audiences: Patients with arthritis, primary care physicians, families of people with arthritis, medical/nursing/PT students and practitioners. Rick doesn’t want to prioritize the importance of any audience group. He claims it’s for all these groups, no specific group. However, as seen in the specific audience descriptions below, Rick has more knowledge and feedback of Arthritis patients using the site.
Audience:
Arthritis patients
Characteristics of people with arthritis:
· Arthritis is a life-long, non-fatal disease, so their information needs are “life-long”
· May not have access to a specialist, such as a rheumatologist
· Easy to forget the information the doctor told them during a visit
· Majority are women. Rick notes that “women are courageous – fighting for independent, to be self reliant, likens them to gladiators. He notes that the population is a “great population to work with.” He provides examples of women who have problems that would “devastate others”. Specifically he talks about a watercolor artist whose arm gets broken because of weakness and is still trying to hold a brush.
· Motivated to learn
· May have sensitive/personal questions they don’t want to ask a doctor, which is provided in the Source
Types of info people with arthritis need:
· To be their own “health maintenance organization”
· To take control of and manage their own life- since arthritis affects every aspect of one’s life
People with arthritis may use the Source to look up:
· General information on “Living with Arthritis”
· Specific information on medications or a type of arthritis
· How-to perform exercises
· Information that may be embarrassing to ask about, such as sex and arthritis.
· Information about specific types of arthritis, when they are in a remote area where there are no specialists.
Goals for patients
· Rick mentions an idea of “bonding patients” to the site.
Primary care physicians
Uses
· Primary care physicians may use the Source to look up information on arthritis for a diagnosis.
· In particular, Rick suggested that possibly useful components of the Source for PCP are exercises and information on types of arthritis.
· Rick claimed that the source could be “terrifically informative for users”.
Knowledge of Actual use
· However, Rick doesn’t know if it’s ever been used this way;
· Rick described how a doctor and patient might collaborate using the Source – the doctor could suggest that the patient do particular exercises and that they can look up the exercises on the Source. In fact, Rick suggests that he currently does this.
· Rick described how two doctors might collaborate using the Source – a less knowledgable doctor may have questions about arthritis, call a hotline, and be referred to the source. Rick suggest that the Orthopedics department currently has outreach to rural doctors and that such doctors are currently referred to the site.
Students
Rick thinks students may use the Source for help in problem-solving class assignments; however, Rick doesn’t know if it’s really used this way.
Advertising of Website
The website is not advertised much because he wants to “update” it. The URL is on stationary and cards (business cards?). He sometimes refers patients to specific information on the Source (ie. exercises), but not all the time.
Rick thinks the UW name lends credibility to the Source.
CD and Kiosk
The intended audiences are the same for the website, CD, and kiosk.
CD’s were given to The Arthritis Foundation about 4 years ago. Rick thinks the CD’s were important as “proof of principle” or proof of the Source. However, tThe Foundation is the only place the CD’s been disseminated to. In the future, he’d like to distribute them to libraries in WA.
The kiosk is “advertised” simply by its location in the facility. It’s surrounded by Arthritis Foundation logos and brochures; it’s part of a “learning center.”
Future goals for the Source
- In the future, Rick would like to make it easier for other doctors to add content to the site. He put in a lot of work, and he would like it to be easier to encourage doctors/experts to take ownership over a subject or area on the site.
- Rick also talked about allowing users to tailor the site.
Video
Rick had many observations about the use of video. Video is currently used to demonstrate exercises. He is concerned about technical issues – include size of files, download time, different video presentation formats, etc. While some movies appear to have voice over, there is no accompanying text description for most of them.
Overall Development Approach.
Rick made several observations about his overall development approach. He talked about how the information is present at two levels of detail. Rick pointed out that there is more information than can be used in one session and that “if they know it is there, at least they know they can come back to it.”
The following are potential research and re-design issues that are suggested from the interview results. Note that there are many issues areas could be researched. Therefore, we need some criteria for choosing among these research areas.
Implications - Questions We can Ask Concerning the Site
Continuity between sessions
11. Continuity Between Sessions
- Do users have an ability to recall information they read, and to find information they wish to revisit?
Collaborations
11. Collaboration between Doctor, Patient and Web
- Do doctor’s recommend web use (not yet, maybe Rick would like to see it)
12. Collaboration between Doctor, Patient, and Web
- what happens in the doctor’s office (field study, if we truly want to understand)
15. Scenario – Collaboration between Doctor and Patient
- Patient: goes to doctor and gets information
- Patient: goes home
- Friend: What did doctor say
- Patient: I don’t remember
18. Rick gives URL for people to look up exercises
- Doing it more and more frequently
- Q: how often does he really do this? How many people actually follow-up? What prevents these people from following up?
21. Patients Bonding to Site
- Rick talked about “Bonding patient to a site” – can we find evidence of this in the logfile
35. Collaborations between Bone/Joint and PCP
Julianne asked Rick – have you talked to any PCP – and he responded that “we often direct them”. He talked about the UW participation in the UWa Physicians Network, staffing physicians throughout King County. He noted that he gets emails with symptoms and directs PCP to source along with a diagnosis. It sounds like he did all the work. It would be good to document an example of this type of use.
Effectiveness of Current Information Organization
21. Effectiveness of Two Levels of Information
- He talked about how the information is present at two levels of detail
- One question I have – are the categories the best categories – what makes a good category?
Controversy
25. The level of Controversy associated with Information in the Source
- We talked a bit about whether the site is meant to be a non-biased web site, and how truly this can be done. For example, are exercises or medication doses controversial? Should they be presented as fact or as controversy? If it is done, what role do controversies play in the design and how do you communicate what is a controversy.
Credibility
36. Primary Care Physicians
Observations – for PCP, it may be more important to have some form of credibility present. Rick suggested that the credibility of the site comes from the Arthritis Foundation logo and the University of Washington logo. Is this sufficient? Should there be some sort of review process?
Design / Science of Learning Research
General Areas
· Information Needs of User Groups. Are the information needs are the same for arthritis patients, medical students, primary care physicians, and all users? Are the “lessons” for arthritis patients the same exact lessons as for medical students, as for nursing students, etc.? Or are the learning goals the same for each audience? If we determine that the many user groups (arthritis patients, primary care physicians, etc.) have different information needs, can we provide one site for different users with different needs? What information architecture would best support that?
· Presenting Different Opinions. Since the medical field is full of differing viewpoints, do we want to offer a range of viewpoints and opinions on the Source? If so, how do we provide differing medical viewpoints, while keeping a cohesive site as well as maintaining credibility?
· Customizing the Site to Support Long-Term Relationships between Users and Source. Since Arthritis patients live with this disease their whole life, they, therefore, have continual information needs on arthritis. So, would a customized Arthritis Source be more helpful? By "customized," I mean something similar to a news site, where you can choose the sections for your home page, or something similar to Amazon, which keeps track of your interests and makes recommendations.
· Re-design to Acknowledge Physical Limitations of Arthritis Patients. Since arthritis often affects people's hands, wrists and arms, we should consider the Source's navigation system. Is there a navigation system appropriate for physically challenged users? For instance, something with less "clicks"?
What are the "Right" or More Useful ways to characterize Users
30. Other User Distinctions
- The above observations and thoughts suggested that a useful distinction might be between a browsing user and a revisit user.
Matching Users with the Right Information
8. Tension – Nuance
- “Old Idea” that of packaging information for specific users
8. Site Tailoring
- Creative environment site that allows users to tailor the site to their needs
- This suggests an open question – what does it mean for users to tailor the site, what depth is required, how to set up the personal site
- Phases of tailoring: Rick suggested that Source is easy to tailor, that previously materials were pre-tailored, and perhaps UCD suggests that users can tailor things themselves
35. If Multiple Users - Maybe Different Users want different information
a. Rick suggests that possibly useful components to PCPs include the exercises and information on types of arthritis.
LongTerm Relationship between User and Site
36. Rick suggests that there is more information than can be used in one session and that “if they know it is there, at least they know they can come back to it.”
31. “No need for user to file information away.” - We would need to better understand this issue!
- Rick makes a comment that there is a lot of information yet there is “no need for user to file information away.” How does this play out in practice? Do users print the information? Do they read it? Can they find it again, when they are looking for it? Do they bookmark specific pages?
Collaborative Site Use - Distributed Site Use: How to promote?
36. With Primary Care Physicians - how to promote, model, synthesize with other approaches?
b. The way Rick is talking suggests that he think PCP might use the Source on a patient by patient basis. What does this suggest about how a doctor might configure the site – as a portfolio on each patient? Further, the PCP might work with patient for the patient to set up their own portal.
c. For PCP, the source provides doctors with the “basic tools”. This suggests a question – how do PCPs get information in other contexts? For other diseases?
Use of Representations
33. Images
- One observation – there are movies in the web site but few diagrams or other images that help to organize or make sense of the information. In general, there are few cues to help you make sense of the information
Capturing Controversy:
Maybe this relates to different between user populations. Doctors may need more information about controversy. How to decide level of controversy to present and present it?
25. The level of Controversy associated with Information in the Source
- We talked a bit about whether the site is meant to be a non-biased web site, and how truly this can be done. For example, are exercises or medication doses controversial? Should they be presented as fact or as controversy? If it is done, what role do controversies play in the design and how do you communicate what is a controversy.
28. Age of the Information
- Medicines – how up to date is this information,
35. Primary Care Physicians
Observations – for PCP, it may be more important to have some form of credibility present. Rick suggested that the credibility of the site comes from the Arthritis Foundation logo and the University of Washington logo. Is this sufficient? Should there be some sort of review process?
Design Implications for Video
4. Rick makes several comments about the use of Video:
- Time to download
- People “may not have resources” to download