WordPress.com
Creating the End of Life Decision-making Website
Prepared by:
Mardi Coleman
December 20, 2010
For HCOM 506
Executive Summary
Background and Significance
The literature is clear that it is wise for consumers to designate a health care proxy, or assign medical powers of attorney. In this way, family members and healthcare providers can avoid disputes over care decisions. To inform others of our choices around treatments and services we want at the end of life requires that we understand what are our values and beliefs.
I developed the idea for the End of Life Decision-making website (EOLD website) based on my review of the literature and personal experiences. I found that consumers of all ages, regardless of health status, are urged in multiple settings to make end of life decisions—about advance directives, treatments, and services—often without adequate information. Based on the Pew Internet reports, I also knew that people who are likely to be advisers to others or who themselves have chronic health conditions are likely to use the internet to seek out ehealth information. Thus, I aimed to create a website that would address this information gap.
The overarching goal of EOLD website is to provide information that allows users to make informed end of life legal, medical treatment, and service decisions.
The website aims are to:
1. 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.
2. 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.
3. Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that will be relevant across many stages of decision-making.
The primary target population for this website is adults ages 35-85 who use the internet for ehealth purposes.
Methods
I used a systematic and structured process aimed to create a website that would be appealing, usable and effective. This process includes conducting a needs assessment, a competitive analysis, a technology and content analysis, and on-going formative and heuristic evaluations.
I conducted a needs assessment based on a review of the literature, the creation of personas (user prototypes), and a competitive analysis of four other websites that address end of life decision-making (Engage with Grace, Aging with Dignity, MOLST (Massachusetts Medical Orders for Life-sustaining Treatment), and Caring Connections. These activities confirmed the need for the End of Life Decision-making website.
I created several iterative mock-ups of the website homepage that incorporated user feedback. The final mock-up (mardcole/EndofLifeDecisionmaking )incorporates established heuristic principles for website design overall and homepage design.
Website Design
I predicated my website design on the assumption that people will seek out different kinds of end of life information at different stages of their life. I have included website sections that address these different stages. For instance, I provide introductory information about what is an advance directive, about what is end of life, and the values that inform end of life decision making. For those who return for more specific information, the website includes additional information that explains life sustaining treatments, and services.
One particular innovation my site is the use of videos that describe each type of advance directive and explains the pros and cons. My site also provides videos regarding the types of life sustaining treatment and then describes what it is like to have each treatment, as well as the treatment’s pros and cons. Further, each page, including the Frequently Asked Questions, will rely on a broad review of the literature, rather than on a few studies. In my services section, I will include a realistic picture of each major type of service including likely costs to the consumer. In this way, I expect my website will provide users information that they may not be able to get from their health care provider, their lawyer, or from other websites.
I am not soliciting user-generated content. However, I have included a Feedback button that provides a brief survey that asks questions about the visitor’s experience using the site, e.g., did they find what they were looking for; how useful was the site; recommendations for improvement. I will use these comments for further refining the website.
Website Rollout
To market the website, I will use a multipronged approach that includes press releases, social media, and contacting local, regional, and national consumer, provider, and payer groups and trade associations. I will continue to conduct formative and heuristic evaluation activities during the first year, and then annually. I have estimated a cost of $66,500 to create and to evaluate this website in the first year, and annual costs to maintain and evaluate the website at $22,500.
Discussion
My competitive analysis found that none of the sites provided nuanced information about end of life planning or detailed descriptions or videos that explained in detail about life sustaining treatments. I believe that the End of Life Decision-making website contains information that is not readily available on the web. By addressing appeal and usability, those who seek out this additional end of life information will be able to find it. The quality of the information I provide on the website is rigorous, balanced, and up to date and enhances the website’s effectiveness.
Overall, I found that using a systematic and structured process to develop a new website is critical to achieving website appeal, usability and effectiveness. This process, which includes conducting a needs assessment, a competitive analysis, a technology and content analysis, and on-going formative and heuristic evaluations, allowed me to create a website that meets established standards and that meets the needs of its intended audience.
My competitive analysis also showed that many websites do not apply the process described in this paper. One reasons for this failure likely is that the process is staff and time intensive (and therefore costly). However, website developers should incorporate all of the steps described in this paper to ensure website success.
Table of Contents
Executive Summary 2
Background 5
What is end of life 6
Why articulate end of life treatment goals and decisions 6
End of life advance directives nationally and in Massachusetts 6
Significance 7
Using a website to increase informed end of life decision-making 7
End of Life Decision-making Website: benefits and risks 7
Specific Aims of the End of Life Decision-making Website 8
Research Design and Methods 8
Target population 8
Needs assessment 8
Competitive analysis 11
Technology and content analysis 20
Design and Development 22
Design decisions 22
Design and development: website evolution 22
Website review 23
HONcode certification 30
Formative and Heuristic Evaluation Plans 30
Formative and heuristic evaluation sessions 31
Formative evaluation sampling 31
Heuristic evaluation sessions 33
Evaluation analysis and reporting 34
Future Evaluation 34
Website Rollout 34
Website success metrics 34
Marketing plan 34
Budget 34
Discussion 36
Personal Biography 36
Background
End-of-life (EOL) decision- making is a topic that is receiving more media and more payer attention. In the United States, the population is increasing, and Americans are living longer. In the United States, the population is increasing and Americans are living longer. In 1900, life expectancy in the United States was 47.3 years. In 2005, life expectancy grew to 77.8 years. Currently, about 1 one 8 Americans is 65 years of age or older. Figure 1 shows US population growth.
As life expectancy has increased, the leading causes of death have changed. Rather than acute infection, Americans now are more likely to die from chronic conditions or cancer. In 2006, the 10 leading causes of death were: (1) diseases of the heart, (2) cancer, (3) stroke, (4) chronic lower respiratory diseases, (5) accidents, (6) diabetes, (7) Alzheimer’s disease, (8) influenza and pneumonia, (9) kidney disease, (10) septicemia[1]. Thus, we can expect that most elder Americans will experience chronic illness, disability, and/or a period of long decline and frailty[2] in the last years of their lives. Figure 2 shows the changes in cause of death from 1950-2005.
Figure 1
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Figure 2
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What is end of life
There currently is no commonly accepted definition for what constitutes “end of life”. In part, this is because end of life is not amenable to regulatory definition [1]. Additionally, despite an array of prognostic tools, with the exception of cancer, physicians have difficulty predicting accurately when death will occur[3].
The National Institutes of Health Consensus Development Program endorses two components as constituting the end of life:
1) The presence of a chronic disease(s) or symptoms or functional impairments that persist but may also fluctuate
2) The symptoms or impairments resulting from the underlying irreversible disease require formal (paid, professional) or informal (unpaid) care and can lead to death [1[4]].
We can also consider end of life using hospice eligibility standards, life expectancy is six months or less.
Why articulate end of life treatment goals and decisions
Patients at the end of life may experience treatment that does not match their treatment preferences, e.g., patients receive over-treatment or under-treatment, in a treatment setting that also does not match their preferences. By involving patients (and their families) in end of life decision-making, patients have time to establish their goals and to make their preferences known to their health care providers and to their families. Patient goals most often noted at the end of life include: (1) be cured, (2) live longer, (3) improve or maintain function/quality of life/ independence, (4) be comfortable, (5) achieve life goals, and (6) provide support for family/caregiver[5]. Studies show that patient and family involvement in end of life decision making can lead to less caretaker stress, lower end of life hospitalization rates and higher rates of hospice services and hospice facilities.
End of life advance directives nationally and in Massachusetts
Patients can use advance directives (ADs) as a vehicle to make their end of life health care decisions known to their health care providers and to their families. An advance directive, as defined by the National Cancer Institute, is “a legal document that states the treatment or care a person wishes to receive or not receive if he or she becomes unable to make medical decisions (for example, due to being unconscious or in a coma)”.
The Patient Self-Determination Act, passed by Congress n 1990 and enacted in 1991, requires that all healthcare institutions receiving Medicaid and Medicare funds inform patients of their right to participate in healthcare decisions, including their right to have an advance directive as defined under state law. Additionally, the Joint Commission[6] requires most health care facilities, e.g., nursing homes and rehabilitation centers, to have a Do Not Resuscitate order policy in place for each resident in order to receive accreditation.
Types of ADs include a living will, assigning a health care proxy, assigning medical powers of attorney, executing a Do Not Resuscitate (DNR) order at the site of care, or executing a more comprehensive DNR that includes out of hospital providers such as emergency medical technicians. To date, all states have legalized one or more forms of advanced directives, with all states recognizing state-specific in-hospital advanced directives. As of 1999, 42 states had instituted state-specific out of hospital advanced directives [5].
Nationally, many states are adopting programs in which health care providers work closely with patients to identify their EOL treatment goals and life sustaining treatment preferences. One such program is the Physician Orders for Life Sustaining Treatment (POLST) paradigm (). POLST is a comprehensive program that patients and their health care providers use to identify patient treatment goals and preferences regarding intubation, transfer to a hospital, the receipt of respiratory support, dialysis support, artificial nutrition, artificial hydration, and other treatment preferences. POLST paradigm programs are underway in all or part of 32 states, including Massachusetts (). Other national programs include Aging with Dignity, an initiative that supports the use of the Five Wishes advance directive, and Engage with Grace, an initiative that urges the population in general to enter in to discussion about their end of life preferences with their loved ones and healthcare providers
Significance
The literature is clear that it is wise for all people to designate a health care proxy, or assign medical powers of attorney. In this way, family members and healthcare providers can avoid disputes over care decisions. The literature is also clear that for people with end stage cancer, for others when death is likely, it is important to make clear end of life decisions regarding life sustaining treatments and services, such as the receipt of hospice care.
More and more, adult are being asked to make end of life decisions without access to comprehensive information to guide decision-making. Many national initiatives urge people to talk with their family members and healthcare providers about their end of life values and beliefs, and to formalize their end of life wishes well before the onset of any serious or chronic disease. However, while these initiatives encourage people to discuss their values, the initiatives do little to educate consumers about how values change over time or how numerous social and psychological factors influences our beliefs about treatments. Initiatives provide consumers with little education about the pros and cons of types of advance directives or life sustaining treatments.
Using a website to increase informed end of life decision-making
We know from the Pew Internet report, The Social Life of Health Information[7] about three quarters of all Americans go online, and that almost 60% use the internet to gather health information for themselves or for others. The Pew Internet report notes that it is likely the use of the internet for ehealth purposes will rise with the continued spread of broadband connectivity and wireless applications. Further, the Pew report notes “online health inquiries have an impact on decisions or actions and there are clearly more positive experiences than negative one.” Thus, creating a website to provide consumers with increased information about end of life decision-making is likely to result in use by those who need information about completing an advance directive and/or making decisions about life sustaining treatments.
End of Life Decision-making Website: benefits and risks
I believe there will be a number of benefits associated with the End of Life Decision-making website (EOLDW). These benefits include:
1. Users will have greater understanding of their own beliefs about end of life treatments and services.
2. The website will increase end of life values clarification between family members, advisers, and healthcare providers.
3. The website will provide realistic expectations about end of life treatments and services, thus allowing users to make informed, timely end of life decisions. One of the aims of the Institute of Medicine’s report, Crossing the Quality Chasm, is to provide patients with the information they need to make informed decisions[8].
4. The website will lead to greater diffusion of knowledge and increased discussion about end of life issues.
The risks associated with the website are:
1. There is a risk that users will perceive web content as medical advice rather than information to guide decision-making. This could lead to risk of lawsuit.
2. The website may not reach a portion of its intended audience, those over age 65, because this population is less likely to use the internet[9].
3. Some of the information found on this website may be contradictory to other national programs, e.g., that healthy residents should make decisions about life sustaining treatments, which could lead to confusion by website users, advisers, and healthcare providers.
Specific Aims of the End of Life Decision-making Website
The overarching goal of this website is to provide information that allows users to make informed end of life legal, medical treatment, and service decisions.
The website aims are to:
1. 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.
2. 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.
3. Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that will be relevant across many stages of decision-making.
Research Design and Methods
Target population
The primary target population for this website is adults ages 35-85. I have chosen this age range because it is at these ages that people are likely to experience the onset of serious or chronic disease is likely to occur, end of life will occur, and/or people begin to face their mortality. Users will be English-speakers, have at least an 8th grade reading comprehension, and will be at least weekly users of the internet.
Needs assessment
I established the need for this website based on a review of the literature and on personal/anecdotal experience. I conducted informal interviews with three attorneys about their need for a resource that could provide more detail to them and their clients about the issues surrounding end of life decision-making. However, the website development will benefit from additional needs assessment that includes a wider range of user input to determine the need for the website and types of content needed.
Conducting additional needs assessment activities will help me identify and address current gaps in what is available, and to develop a website that users will want to visit and will find useful.
Personas and Scenarios
As a first step in the needs assessment process, I created personas, prototypical users of my website. I created my personas based on my experiences, from interviews, from web-based resources, and from reading the peer-reviewed literature. In creating scenarios, I considered and incorporated the following factors: age, geographic location, health status, health services needs, reason for searching out the website (on behalf of self, others, or as an advisor), and continuum of beliefs about end of life.
Persona 1: Family member seeking information on behalf of spouse
Frank H., age 60, is married to Thelma, age 58. Frank and Thelma reside in a Tucson, Arizona. Thelma has multiple sclerosis. Thelma’s functional levels are decreasing markedly. Thelma has always taken care of everyone in her family and particularly caters to her husband. Frank was laid off six months ago and still has not found a job. Finances are tight. Frank knows that Thelma worries about what will happen when she is no longer able to work. He knows that she worries about the impact of current and future health expenses, and the costs of having in-home care if she is unable to care for herself or for their home. Frank worries about finances, too, but is confident when the time comes, he can take care of Thelma, the house, and the finances. He wants to give back the love and the care she has given to him.
Recently Thelma has been saying that she thinks that it might be a good idea to have an advance directive so that if she became quite ill, she could refuse treatment. Frank is worried that Thelma could fill out a legal document based on her fear of being a burden, rather than what is good her and for the family. He and Thelma have had long discussions about this topic, but she remains adamant about not wanting to burden him or the family. Frank goes online to find information about advance directives. He finds the Understanding End of Life Decision-making website. There he learns that some women have just the reaction his Thelma is having. He decides to show this information to Thelma, and if she agrees, to take this information to her doctor so that they can both discuss Thelma’s worries with her doctor. Whatever the outcome, Frank resolves to honor Thelma’s decision. Frank is comforted by learning from the website that people often change their mind about their end of life preferences.
Persona 2: Patient/Consumer seeking information for himself
Fred H. is a healthy 86-year-old African American male. Fred lives in Eugene, Oregon in the house he and his wife bought fifty years ago. He takes one medication to control high blood pressure. Fred’s wife died ten years ago, but Fred has many friends that he meets regularly for coffee, cards, or to watch a football or baseball game. Fred still drives during the day. Fred goes to the local YMCA three times a week to work out. Fred prides himself on being able to take care of himself. Fred wonders sometimes whether he should make his end of life wishes known. He hopes that he will just go suddenly from a heart attack, as his father did at the age of 92. But, then he wonders, what if he doesn’t? What if he gets a stroke and has to go to a nursing home? He has visited friends when they have been placed in a nursing home, and Fred doesn’t think he’d like it much. He knows that he does not want to be kept alive if he is brain dead and helpless.
Fred is thinking about completing an advance directive and naming his youngest son as his health care proxy. He wants to be able to detail what his end of life preferences, but beyond not being kept alive when he’s brain dead, he’s not sure what his preferences are. He’s never really been very sick. He’s not sure what it means to be intubated, or what it’s like to be on an oxygen machine. He wishes that he could find something that he could read that could explain that to him. His doctor is a great guy, but his doctor is also very busy. Fred doesn’t want to waste his doctor’s time asking him his questions. Fred decides to search the web. There, he finds the Understanding End of Life Decisions website, and finds that the website addresses many of his concerns. After reading through the website, Fred finds he has the information to communicate to his son his end of life preferences.
Persona 3: Probate/civil attorney seeking information on behalf of clients
Marge M. is a single-practice probate attorney who rents office space within a suite of other single-practice attorneys in Worcester, Massachusetts. Marge, age 38, has been witnessing what she perceives as the beginning of physical decline in her parents—a general slowing down as their health complaints add up. Her father has congestive heart failure that prevents him from being as active as he has been. Her mother’s arthritis limits her mobility and she recently was diagnosed with the onset of macular degeneration. However, both parents spend as much time as they can with their children and grandchildren. Marge’s maternal grandparents died when she was in her 20’s. She remembers that they both were in and out of the hospital quite a bit before they died, and that her mother spent a lot of time caring for them during the last few months of their lives. Marge has a brother who was in serious car accident when he was 20 that left him wheelchair bound and with a colostomy. Marge’s brother has a job and an apartment. Home care services allow him to live independently.
In Marge’s practice, she has clients who ask her advice and help in completing advance directives. These clients range from the “worried well” about to have a common surgical procedure to clients with end stage cancer. She understands the importance of making end of life preferences known. She wonders how much preferences change over time. She has found that clients who have filled out an advance directive that limits care options often return to revise the advance directive to include more options. She has seen those assigned as health care proxy struggle with decision-making. Because Marge is in a single practice, she can spend some extra time when needed with her clients. Based on her parents’ and brother’s experiences, Marge realizes that changes in health, limitations in mobility , or changes in bowel function do not have to limit one’s zest for life. However, she also knows that many people are extremely fearful of any limitations or changes in their health status, and are quite adamant about “not wanting to be hooked up to any machines”. Marge wants to find a website that will explain end of life options, but also explains the implications of having a feeding tube. Marge wants additional knowledge that can enhance her ability to advise her clients.
User group input
In the next phase of the needs assessment, I would conduct focus groups to get feedback from potential users of the EOLD website. I chose focus groups as my primary method because I believe the interaction of group members will allow for more idea creation and elicit more thoughtful responses than would surveys or interviews.
Each focus group will represent the following stakeholder groups: people 35-64 with no serious medical condition; people 35-64 who have aging parents and/or care for a chronically ill spouse or child; people 35-65 with end stage cancer; people 35-55 with physical disabilities that limit mobility; 65+, and at least one focus group with service providers and one with healthcare providers. The topics that I will address in the focus groups include:
• Participants understanding of advance directives and end of life planning
• How participants use the internet to gather health information
• What are areas regarding end of life beliefs and values, treatments, services, and advance directives participants want more information
• Useful information formats
• Keywords they might use to seek out information
• Participants’ familiarity and use of social media regarding health issues
• What really annoy participants when they search the internet for health information
• What features a “best practice” health-related website would have
Once the needs assessment data collection phase is complete, I will compile and analyze my results. I will then use the needs assessment results to inform my website design.
Competitive analysis
In order to design a website that expands and that improves upon what is currently available to users, I conducted a competitive analysis of websites with similar aims as my website. I searched for potential competitor websites using the following terms: end of life, end of life decision-making, life sustaining treatments, palliative care. I also searched for MOLST, an advance directive program piloted in Massachusetts based on my knowledge of the program. I used the following criteria to select my competitor sites:
1. The site must be a national site with broad diffusion and high name recognition
2. The site must be a program in Massachusetts[10]
To conduct my competitive analysis using a systematic process, I evaluated each site based on established heuristics. I then determined what features I wanted to adapt or to incorporate, and which features I wanted to avoid. Tables 1-4 show the results of the competitive analysis.
Table 1: Competitive Analysis Results—Engage with Grace
|Website 1: Engage with Grace () |
|Screen shot |
|[pic] |
|Purpose |The purpose of the Engage with Grace website is to encourage people of all ages to think about their end of life |
| |preferences and to encourage people to let their immediate family and other life decision-makers know these preferences. |
|Target audience |The target audience is a general age audience, with an emphasis on working adults. All website content is available in |
| |English. The website provides the Engage with Grace questionnaire in Spanish. |
|Layout & Navigation |The layout seems very clear and navigation to sections is easy. However, page subsections are not available to the user |
| |through drop-down menus, making navigation to additional content impossible from the home page. |
|Currency |There is no information on this website to indicate any date of review. I found no information to indicate a date created |
| |or a last update for this website. The website has a Recent Coverage tab that documents relevant press activity. Based on |
| |the press dates, I inferred the website inception date to be very early 2008. |
|Authors |I was unclear as to whether I found the website authors. On the About Engage with Grace webpage I found the two people who|
| |conceptualized the website but it was not clear if they were the content authors. The producer of the website is clearly |
| |noted. |
|Readability |I used the Flesch-Kincaid Readability tool to determine a 7.6 grade level for the website. Some pages of the website |
| |contain very long paragraphs with few or no headings to guide the reader or to break up the text. This could deter |
| |readers. |
|Language |This website did not use confusing language, jargon, or abbreviations. |
|Organization |The home page states the website’s goal and vision. The home page contains nothing but necessary information. However, the|
| |layout of the home page does not draw the user’s eye quickly to the goal and vision. |
|Branding |This website has no accreditation, no branding, and no advertising. The website has a “Thank you” page that acknowledges |
| |supporters. These supporters include the family whose story is featured on the webpage; Health 2.0; and, other supporters |
| |or advisers. |
|Design |The website’s visual design is somewhat stark, but compelling. Overall, the text and content layout seemed somewhat |
| |amateurish; the layout did not seem designed to engage a busy user. As noted earlier, there is a lot of text to read |
| |without providing subheadings to guide the reader. A 10-minute video describes the purpose of the site. I found the video |
| |to be interesting but too long. I wondered if others who came to the site would take the time to watch the video. |
|Section organization |The sections are: Download the One Slide, Share the One Slide, Answer the 5 Questions, About Engage with Grace, and Recent|
| |Coverage. |
| |Above you will find the primary website sections. Clicking on each section leads the user to a new page. With the |
| |exception of the Answer the 5 Questions section and Share the One Slide, each page has its own subsections. Download the |
| |One Slide contains both text sections and downloads. Share Your Stories allows users to read stories, and to provide their|
| |own story. About Engage With Grace has six sections: a video; Za’s Story; Our Vision; Why It Matters; Outside Resources; |
| |Thank You. Recent Coverage provides sections on Printed Press; Websites and Blogs; Radio Broadcasts; Television. Of note, |
| |at the bottom of the Five Questions section is a very small link the user can click on in the user is interested in |
| |learning how to complete a health care proxy form. |
|Expert-generated |Expert generated content include the five questions, the video/audio and a download of the video, other |
|content |downloads/PowerPoint slides, the text, and the features that allow the user to send the website to others, |
| |register/log-in, and to provide their story. |
|User-generated content |The ability for users to post their own story is the only user-generated content on this website. |
|Policies |The website provides a contact us function for users to indicate any objectionable content found on the story page. The |
| |website includes HIPAA confidentiality requirements and protections regarding the use of the Five Questions data and |
| |regarding the use of any demographic data that the user supplies. |
|Registration |The website includes a registration function. Registration benefits are that the user can store the results of their five |
| |questions, the user could provide optional demographic information the website owners could use for analysis purposes, and|
| |that the results of the five questions could be available to others. However, on a password protected site, it was unclear|
| |to me how designated others would access the site. It did not appear that registration offered the user much benefit. |
|Add-ons |The website has no add-ons. |
|Financial |The website has no financial options. |
|Users |By reading the stories on the Share Your Stories page, one can find and/or infer information about users that includes |
| |testimonials. The website has no designated sections regarding testimonials or number of users. |
|Social Media |The homepage includes a Twitter and Facebook link. The Twitter link allows the user to receive tweets |
|Overall assessment |The website homepage is visually engaging because of its stark and simple home page design, but the goal and vision on the|
| |home page are somewhat obscured by the design. An excellent feature is the video, but the video is too long. The overall |
| |usability of the site is its worst feature. The website needs drop-down menus for subsections. The Download One Slide page|
| |has 3 slides. The website could benefit from additional design features that make it more “snappy” and easier to find |
| |content. |
Table 2: Competitive Analysis Results—MOLST
|Website 2: Massachusetts Medical Orders for Life-Sustaining Treatment () |
|[pic] |
|Purpose |This website describes the Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST) demonstration project |
| |conducted in Worcester, MA; this project encourages Worcester residents to complete a MOLST form in order to document |
| |their end of life preferences regarding treatment and site of care. |
|Target audience |Based on the tabs, the target audiences for this website are patients and their families, and health professionals. The |
| |homepage graphic focuses primarily on an elderly women and a younger woman. (However, the home page contains a major |
| |spelling error; the word “patients” is spelled patents, and this could be confusing to new visitors.) |
|Layout & Navigation |The home page at first appears crisp and appealing. The sections at the top are distinct topics and make sense; there is a|
| |nice use of color to distinguish different content areas. Then, the home page becomes a little confused as it appears that|
| |the website contains more sections than may be necessary. There are more sections at the bottom of the page, with one |
| |section, Forms, redundant with the Forms section at the top of the page. There are no drop-down menus to let the user know|
| |what they can expect to find within each section. On each section page, the user finds additional menus; this arrangement |
| |makes navigation difficult. |
|Currency |There is no indication on this website as to the content publish date or the date of any review. |
|Authors |The website has no authors indicated. |
|Readability |I used the Flesch-Kincaid Readability tool to determine a 13.1 grade level for text on the homepage; 12.9 on the Patients |
| |and Families page; 12.2 on the Forms and Instructions page; a 15.9 on the About MOLST page; and a 12.6 on the Resources |
| |page. The website’s reading level is likely too high to engage a broad range of users. |
|Language |This website provides a glossary of terms (although the glossary is not accessible on the homepage). Website visitors will|
| |need the glossary as the website uses many medical terms without providing a definition/explanation in parentheses. The |
| |sentence structure, as indicated by the readability levels, can be confusing and difficult to follow. The website does not|
| |offer any content translation into other languages, although the site notes the MOLST form is available in multiple |
| |languages. |
|Organization |The home page does not clearly indicate what the website’s purpose or the vision. |
|Branding |The website has no branding, accreditation, or clinician involvement. |
|Design |The website’s design use of pictures helps the website overcome some its overall feel of not having a professional web |
| |designer; but the misspelling of patient as patent on the Patents and Families section tab speaks to the lack of a |
| |professional designer. The site uses a mix of fonts for the FAQs pages. The section pages use different orders for the |
| |subsections. The order of the sections on the home page is not intuitive. The website would have benefited from pilot |
| |testing and user feedback. |
|Section organization |The home page has an array of sections: (Top Menu) Patients and Families; Health Professionals; Forms & Instructions; |
| |About MOLST; Resources; (Middle Menu) Read More About MOLST; For Clinicians who receive a MOLST Form. (Bottom Menu) FAQ; |
| |Forms; Training; MOLST Stories. Each section page has additional subsection menus. |
|Expert-generated |It is clear that much of the text is expert-generated, especially the text that deals with technical areas, such as |
|content |training, the site for lawyers. The website does not use graphics, blogs, directions/maps, or ask the expert features; |
| |but, does have a video with audio. |
|User-generated content |The website has no user-generated content |
|Policies |NA |
|Registration |The website does not offer registration, profiles, or personalization |
|Add-ons |The website does not offer add-ons. |
|Financial |The website does offer opportunities to donate, subscribe, or join |
|Users |The website has a 13-minute video that offers stories from patients, families, and providers |
|Social Media |No social media is used; there are no opportunities to share content. |
|Overall assessment |The website offers a few good features, e.g., use of pictures, a video, and some content sections, that are overwhelmed by|
| |the website’s poor design and layout, and mishmash of content areas. |
Table 3: Competitive Analysis Results—Aging with Dignity
|Website 3: Aging with Dignity () |
|[pic] |
|Purpose |The purpose of the website is to support the use of Five Wishes. Five Wishes is an advance directive and an overarching |
| |initiative that helps patients document how they wish to be treated if they are seriously ill and unable to speak for |
| |themselves. The website notes that Five Wishes addresses a person's medical, personal, emotional and spiritual needs at |
| |their presumed end of life. |
|Target audience |This website targets the elderly and the disabled, family members, health providers, medical professionals, businesses and|
| |employers, and members of the religious community. The section order is intuitive and easy to use. |
|Layout & Navigation |This website is very well laid out and is very easy to navigate. There is a 1-1 correspondence between sections; e.g., if |
| |you click on Latest News, the user goes to the News section, the lower Welcome section brings the user to the About Us |
| |section. Each section has a drop-down menu. |
|Currency |The website has a copyright date of 2010. |
|Authors |The Aging with Dignity organization sponsors this website. No content authors are noted. The website does not show an |
| |advisory board. |
|Readability |I used the Flesch-Kincaid Readability tool to determine that almost all of the website text is at or above a 12.8 level. |
| |The Five Wishes description is at a 9.4 level. The website offers a text size increase/decrease feature. The website does |
| |not offer any translation into other languages, but does note that the Five Wishes materials are available in 26 |
| |languages. |
|Language |Beyond the fact that the content is written at a level likely to deter readers with low reading skills or limited |
| |education, there is little use of jargon, confusing language, or abbreviations. |
|Organization |The website’s home page is very informative; the purpose and vision are readily available. The home page has a slide |
| |section I found to be very effective. Each of the six slides targets a specific concern and has bullets that the user can |
| |click for further information. Another particularly effective section is Five Wishes and You. This section includes four |
| |click-on boxes of different users groups and the click on boxes each has a photo of the intended user group. |
|Branding |Branding is confined to the Aging with Dignity organization. The website is not accredited. I found no evidence of |
| |clinician involvement. |
|Design |This website has a very professional design that is engaging and crisp. |
|Section organization |The website homepage has seven sections: Home, About Us, Five Wishes, News, Stories, Community Resources, and Contact Us. |
| |Each section has a drop-down menu that describes section content. |
|Expert-generated |The entire website relies heavily on expert-generated content in these areas: text, graphics, and videos. The website does|
|content |not include a blog, directions/maps, or ask the expert features. |
|User-generated content |The website invites users to submit their stories to the website. The website offers no other user-generated content. |
|Policies |The website has a Feedback button located in the story section. The Feedback section offers users the ability to provide |
| |feedback electronically, by phone, and by mail. The website promises to respect the confidentiality of all feedback. |
|Registration |The user can register at the shopping site to purchase materials, at the newsletter site to receive the Five Minutes with |
| |Five Wishes e-newsletter, and at the donation site to make donations. Each site requires a separate registration process. |
|Add-ons |Users can sign up for a newsletter. |
|Financial |Users can donate and can buy Five Wishes materials, e.g., forms, videos, training materials |
|Users |The website has a Stories page that provides stories about the use of the Five Wishes advance directive and process. Users|
| |are invited to submit their own Five Wishes stories. |
|Social Media |No social media is used; content cannot be shared. |
|Overall assessment |My overall assessment is that this website used a professional staff to create this well organized and easy to use |
| |website. The best features are its ease of use. Despite the fact that a great deal of information is available on the |
| |site, I did not feel overwhelmed. The site uses many pictures as well to tell its story. While available, the opportunity |
| |to donate does not overwhelm or dominate the site. Opportunities for improvement include lowering the reading level; |
| |determining if all of the provided content areas are needed; and providing a resource list that is not limited to |
| |community resources as they relate to the Five Wishes initiative. |
Table 4: Competitive Analysis Results—Caring Connections
|Website 4: Caring Connections () |
|[pic] |
|Purpose |The purpose of the website is not clear from the homepage; the user must go to the About Us section to learn the purpose |
| |of the website. I inferred the purpose is to provide information on caring for chronically ill and/or seriously ill |
| |people, not necessarily at the end of life, but then found I was wrong. The section headings are ambiguous. The lead |
| |story, A Business that Cares, doesn’t by itself tell me anything substantive about what I might expect to find on the |
| |website. |
|Target audience |The target audience is consumers, family members/care-givers, employers |
|Layout & Navigation |The homepage layout includes redundant sections. A great deal of space on the right hand side of the homepage and each |
| |section page includes a column with advertising and resources guides. At times, it is difficult to know in this section |
| |which is a resource guide and which is an advertisement. There are no drop-down menus on the section tabs. The layout of |
| |each section page includes menus of options on relevant topics. Overall, the layout and navigation are poor across all |
| |website sections. |
|Currency |I found no indication for when content was published or reviewed, or any other dates relevant to the website. |
|Authors |The website is produced by the National Hospice and Palliative Care Organization. |
|Readability |Using Flesch-Kincaid Readability tool, readability ranged from 8.3-13.9, too high for many patient and/or family members. |
| |Additional click on content found on section pages in particular required a high reading comprehension level. Font sizes |
| |and colors were at times distracting. The website is available in English only. The reader can adjust the font size. |
|Language |As noted above, the high reading levels will deter some readers who perceive “big words” to be jargon. The website uses |
| |very little technical jargon, and does not use abbreviations/acronyms. |
|Organization |The home page does not indicate its vision or its purpose. It is difficult to tell from the home page that this website |
| |addresses end of life care. |
|Branding |Each page of the website indicates that funding for the website was made available from the Robert Wood Johnson |
| |Foundation. The website has no accreditation and no clinician involvement indicated. The website has advertisers. |
|Design |The website design seems moderately professional. Clearly, someone with some training put the site together. Overall, the |
| |website seems jumbled and lacks a clear purpose. |
|Section organization |The website sections are: Home, Planning Ahead, Caring for Someone, Grieving a Loss, Community, Employer. Each section |
| |page includes many other options and links. The website provides a site map that helped me to have a better understanding |
| |of the web content. |
|Expert-generated |The website text required content expertise to produce. The website does not include graphics, audio, video, blogs, |
|content |directions/maps, ask the expert. |
|User-generated content |The website has no user-generated content. |
|Policies |NA |
|Registration |The website does not include registration. |
|Add-ons |The website does not include add-ons. |
|Financial |Users can donate at the Support Us page. The website offers its Caring Connections materials free for one time use; |
| |otherwise, the user must purchase materials when used in bulk. While difficult to locate, the user can subscribe to a |
| |Connections newsletter. |
|Users |The website does not include information about users. |
|Social Media |The website provides a Facebook link. However, when I clicked on the FB icon, I was not directed to the Caring Connections|
| |page. When I searched for Caring Connections on FB, I found one clear choice and seven other likely possibilities for |
| |Caring Connections. |
|Overall assessment |Overall, this website is very confusing, but provides a lot of information if you are willing to dig for it and you have a|
| |college education to understand the content. Worst features: lack of drop down menus; poor maintenance—FB link doesn’t |
| |work; one webpage background color was not consistent and was difficult to read; some links don’t lead the user to |
| |expected content. There is no glossary of terms. The website purpose is not clear. Web section pages were slow to load. |
| |Best features: a lot of information and free downloads; hot links for terms, although that also was distracting; |
After conducting the competitive analysis, I found that it is very important to think through content and technology decisions. Only the Aging with Dignity website was consistently appealing, usable, and effective. The Engage with Grace website had many good features, but suffered from poor navigation. I determined that I would use the Aging with Dignity as a model for my own website.
In general, I was not sure about how sites used stories. While the stories promoted the site’s purpose, the websites did not make it clear how stories were selected or solicited, or if stories were edited. In addition, all the stories promoted the central purpose of the site. Because of these factors, I felt that I did not want to include stories or blogs because I do not want to compromise my website’s tone of neutrality.
I found that none of the sites provided nuanced information about end of life planning or detailed descriptions or videos that explained in detail about life sustaining treatments. None of the website provided recent research findings about end of life decision making.
To differentiate the End of Life Decision-making website from other sites, I will aim to have a simple design, drop-down menus, an intuitive layout, engaging text, and not try to be all things to all possible users. Unlike my competitors, I feel that it is essential that my website provide clear explanations about how values change over time regarding end of life; and, what are the major types of advance directives and of life sustaining treatments, including the pros and the cons. Other competitor sites urge their website visitors to complete an advance directive without adequately explaining the implications.
One particular innovation my site will include is the use of videos that describe each type of advance directive and explains the pros and cons. My site also provides videos regarding the types of life sustaining treatment and then describes what it is like to have each treatment, as well as the treatment’s pros and cons. Further, each page, including the Frequently Asked Questions, will rely on a broad review of the literature, rather than on a few studies (as my competitor sites do). In my services section, I will include a realistic picture of each major type of service. In this way, I expect my website will provide users information that they may not be able to get from their health care provider, their lawyer, or from other websites.
Technology and content analysis
I used the results from the competitive analysis to make technology and content decisions about the EOLD website. Table 5 shows the decisions that I used to inform the development of the website design.
Table 5: End of Life Decision-making Website Technology and Content Analysis
|Item |Decision, Justification and Comparative Analysis |
|Purpose | |
|Website Name |Understanding End of Life Decisions |
|Tagline |Make the right choice at the right time |
|Imagery |I will incorporate imagery/pictures that show a range of ages and situations that draw reflect |
| |different aspects of end of life decision-making. |
| Justification-Needs Assessment |I could find no websites that offered an objective overview of what influences people to complete an |
| |advance directive, or to make end of life decisions. I found the same few studies used as sources, and |
| |no recent literature cited. I believe the website name/tagline reflect that this website will provide |
| |that information, and the website name/tagline will maximize likely search terms |
| |Imagery needs to incorporate a range of ages, as end of life decision making applies to people of any |
| |age faced with a life-threatening illness or condition. |
| Justification-Comp Analysis |Three of the websites I reviewed had names that I found to be somewhat ambiguous. Only one of the |
| |websites used taglines. |
|Target Audience(s) | |
|Population clarity |The target audience is any adult thinking about completing an advance directive; thus, adults with a |
| |chronic condition, medical frailty, cancer, healthy adults who wish to be proactive. This website will |
| |not target children or adolescents at this time. The website does not target health care or service |
| |providers. |
| |Because of the need to address cultural issues, this website will not target specifically other ethnic |
| |populations. |
|Segmentation |I think the information the website offers should not be segmented by population, e.g., men, women, or |
| |by men/women by condition, patients/families, by condition, as the information is generally useful. |
| |However, I will offer a special issues section, with a dropdown menu for women, African Americans, |
| |depression |
| Justification-Needs Assessment |As above, the information will be useful to any website visitor. |
| Justification-Comp Analysis |Other websites generally segmented by providers, patients, families, elderly, disabled, etc. |
|Layout and Navigation | |
|Labels |Labels reflect the major sections, and are in intuitive order. See Figure 3. |
|Menus |I provide drop-down menus for each section. See Figure 3. |
| Justification-Needs Assessment |Users want easily accessible content with drop down menus. Sections and labels should be laid out in an|
| |intuitive fashion. |
| Justification-Comp Analysis |I am trying to adapt the Aging with Dignity website, and take some examples from other websites we have|
| |seen in class regarding panel menus, or menus at the bottom of the page |
|Currency | |
|Publish/review dates |I will include the date published for the website launch, and I will include the date each time I |
| |update the website content. |
| Justification-Needs Assessment |One of my complaints is that other websites include older information about end of life decision |
| |making. Therefore, to add credence to my site, I need to include a publish date, e.g., that I am not |
| |overlooking new studies. |
| Justification-Comp Analysis |Only one website provided a review date; no site had a publish date. |
|Authors | |
|Authors listed? |I will indicate on the website that I have authored/created the website. |
| Justification-Needs Assessment |Although it does not appear to be the standard, I think it is important that readers know who wrote or |
| |who produced the website. |
| Justification-Comp Analysis |The sites I reviewed did not provide credit any authors for content. |
|Readability | |
|Reading level |My aim is to have the majority of the website content at an 8th readability level; however, it is |
| |likely because of some of the terms that are associated with end of life care, the reading level will |
| |rise in some sections. I will break up the content within sections by using subheadings, bolding text. |
|Justification-Needs Assessment |A broad range of people will visit my website. All visitors will be able to read/understand the web |
| |content if the content I write is at about an 8th grade level. |
|Justification-Comp Analysis |I found that websites that do not break up text, that are written at a high reading level were less |
| |engaging. |
|Language | |
|Jargon/Glossary |I will limit the amount of jargon. I cannot avoid the use of technical terms. When I use technical |
| |terms, I will provide a simpler definition in parentheses, and hot link the term to the website’s |
| |Glossary of Terms. |
|Translation |I will create the website in English. I will not provide translation into other languages. Rather, I |
| |think it would be better to have separate websites in additional languages. In that way, I can address |
| |specifically the values that are inherent in Asian cultures, Latino cultures, and other cultures around|
| |end of life. Once I create additional websites, each website will provide cross-links. |
|Accessibility |I will provide an increase/decrease font size button. |
| Justification-Needs Assessment |A broad range of people will visit my website. Jargon, technical language, abbreviations can be a |
| |deterrent to visitors. |
| Justification-Comp Analysis |It appeared to be a best practice to include a font size button, and to include a glossary. Writing at |
| |a high grade level had the appearance of jargon. While the Engage with Grace website did not use |
| |jargon, it lost the reader with lots of text but no subheadings and no use of bolding to break up text.|
|Organization | |
|Informative, purpose and vision clear |The purpose and vision are clearly stated; the home page sections are clear and informative |
|stated | |
| Justification-Needs Assessment |Web visitors should be able to tell quickly whether or not this website that will answer their |
| |questions |
| Justification-Comp Analysis |I found the homepage needs to “grab” the visitor. I found information on two websites only because I |
| |knew beforehand what to expect at those websites. |
Design and Development
Design decisions
In creating my website homepage and one secondary webpage, I aimed to develop a website that would address the gaps identified in my needs assessment, e.g., that met the needs of my personas, that addressed the results of competitive analysis and my technology and content decisions. I also aimed to incorporate the U.S. DHHS Research –Based Web Design and Usability Guidelines ().
Design and development: website evolution
I encountered a number of design challenges creating the website mock-ups. To visualize the website layout, I first put the website into a word table (See Figure 3). This allowed me to get a feel for where I wanted content, to incorporate drop-down menus, and to begin to work with images.
I then attempted to create an actual website using Google Sites, a free web design tool. However, the learning curve was too steep to use this tool.
Next, I tried to assemble the website in PowerPoint (See Figure 4). Here I encountered difficulty with sizing options, inserting text, sizing pictures, deciding what to do with white space. Overall, I had difficulty putting sections and subsections where I wanted them, and creating a consistent and appealing palette.
Next, I decided to use , another free website package. I found a template on the Wix site that I thought would be appropriate to modify for my site—I liked the format and I particularly liked the palette. Unfortunately, Wix didn’t provide a lot of formatting options, e.g., there was no option for adding text boxes, I couldn’t paste in Facebook or Twitter icons. I had to work with what was already there, which led to a different layout from I had originally intended. Despite these limitations, the mock-up looked like a website (See Figure 5).
After receiving feedback about my website design (too wordy, need for parallel menus, better images) I updated my website (See Figure 6) and created a subpage (see Figure 7).
I believe a lesson learned is to create a mock-up based on the needs assessment process identified in this paper, and then engage a web designer. I learned a lot from creating my own site, but I also learned that I need more skill and expertise in web design.
Website review
The website meets the needs of first time and repeat visitors because it incorporates established heuristics for general development and for homepage design. Additionally, the site is visually appealing—the layout is crisp and the welcome section has been broken up into sections with headings; the color palette is appealing; I incorporate a font that is modern; imagery conveys the intended user; the overall layout is simple. First time visitors will be able to find quickly the website purpose and will be able to determine quickly whether the website sections contain information they need or want.
My website design is predicated on the assumption that people will seek out different kinds of end of life information at different stages of their life, or the life of someone for whom they are providing advice. I have included sections that address these different stages. For instance, I provide introductory information about what is an advance directive, about what is end of life, and the values that inform end of life decision making. For those return for more specific information, there is additional information that explains life sustaining treatments, and services.
I am not soliciting user-generated content. However, I am including a Feedback button that provides a brief survey that asks questions about the visitor’s experience using the site, e.g., did they find what they were looking for; how useful was the site; recommendations for improvement. I will use these comments for further refining the website.
My site is appealing to my intended audience because of the range of topics I provide, the use of imagery that indicates the intended users, and the website’s design and layout are (reasonably) appealing. As noted in section A, I feel I have incorporated design features that are based on best practices. A distinctive and very useful portion of my site is videos that explain what are life sustaining treatments and their implications.
I have designed my website so that sections are clearly marked, and are in an intuitive order. Each section contains drop-down menus to guide the user’s reading choices. Each section contains hot linked keywords so that clicking on a key word or question will direct the user to the appropriate section. For instance, clicking on a Frequently Asked Question regarding “What is an advance directive?” will bring the user to the advance directive section. The use of the search box will bring the user to the appropriate section. I provide an increase/decrease text size function to help readers with low vision. I have written the web pages to be at about an 8th grade readability level, and have limited my use of jargon and abbreviations. When used, I provide definitions for technical terms (or jargon) in parentheses, and I hot link those terms to the glossary.
I believe that the website contains information that is not readily available on the web. By addressing appeal and usability, those who seek out this additional end of life information will be able to find it. The quality of the information I provide on the website will be/is rigorous, balanced, and up to date and will enhance the website’s effectiveness. The use of the Feedback button will also help ensure that I am aware of any major issues with the website.
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HONcode certification
The Health On the Net Foundation provides certification for websites that meet its eight standards. The HONcode certification seal on a website means consumers can trust the website’s information. Below I address to what extent my website incorporates HONcode principles. Based on this analysis, I think it likely my website can receive HONcode certification and I would pursue certification.
1. Authoritative: I indicate on my website that I am the author and how I have gathered information. News and articles on the website are from peer-reviewed journals, reliable news sources (NY Times, MEDscape), or other reliable known sources, e.g., federal agency, national foundations such as the California HealthCare Foundation or the Robert Wood Johnson Foundation.
2. Complementary: I ask users to share their values with their doctor and with their family
3. Privacy: the website has a privacy policy that includes how cookies/tracking are/not used; how privacy of feedback button and contact button is maintained
4. Attribution: All relevant information on the website includes citations.
5. Justifiability: the website makes no claims related to benefits/performance
6. Transparency: presentation is accessible, as described in the justification section. I include an accurate email contact address.
7. Financial disclosure: not applicable at this time, but I will report on the website any funding, services, or materials if I receive such support for the website.
8. Advertising policy: not applicable at this time. I do not intend to accept advertisements.
Formative and Heuristic Evaluation Plans
Formative evaluation is used to obtain user feedback during the design and development stages of a project [11]. Formative evaluation typically is iterative, e.g., conducted across different stages of project development, and each stage of the evaluation informs the next stage in the project development. Formative evaluation incorporates four activities: planning the sessions, conducting the sessions, compiling and analyzing results, and prioritization of results. Figure 8 illustrates the formative evaluation process. For this evaluation, my formative evaluation method is to conduct in-person interviews.
Figure 8
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Source: Lisa Neal, Adjunct Professor, Tufts University School of Medicine
Heuristic evaluation uses experts with specific content expertise to assess defined aspects of the project. For this evaluation, we will use heuristic evaluators in two areas: (1) to determine what works and what doesn’t work regarding the website, and as using an established list of heuristic usability principles[12][13] and (2) to review the website content for accuracy and objectivity.
It is important to use heuristic evaluation for this website because this type of evaluation discovers higher-level website issues by assessing the website using established standards. While it is essential to gather user experience, some users may not be able to discern more technical website problems that heuristic evaluation reveals. These content experts also assess the web content for appeal and usability, but are most often used to assess the accuracy of the web content.
Formative and heuristic evaluation sessions
I will conduct a formative evaluation of the first mock-up of the website and then use formative evaluation again prior to rollout. In this way, I will get valuable user feedback that I can use to make sure my website has appeal and usability, and is effective at providing information that website visitors can use[14].
For the web content, I will have content experts review website content prior to the first formative evaluation session. If I receive feedback at the first formative session that more or less content is needed, I will engage contact experts to review website content after any major additions to the website content.
Formative evaluation sampling
This evaluation uses a convenience sample of people who respond to my recruitment strategies, e.g., personal requests, flyers, Facebook request, Craigslist. These recruitment strategies will include screening questions that allow me to recruit respondents that match the sampling strategy provided below.
Based on my review of the literature, I will exclude respondents with end stage cancer. People with end stage cancer are more likely to have access to a range of services and to receive more assistance in making end of life decisions. This website is geared to those who are familiar with using the internet on their own behalf, or on the behalf of others. Therefore, the general characteristics of respondents will reflect at least an 8th grade reading comprehension and at least weekly use of the internet.
I will interview 4-8 people at each formative evaluation stage, based on recruitment response. Thus, interviewing eight people is the ideal, and interviewing four people is the minimum. I will try to recruit at least 1-2 people who will be able to participate across the website’s development. The evolution of the site will benefit from having some consistency in respondents across the three formative evaluation stages. It is most important to me to have the largest number of respondents at the mock-up stage—I want to make sure that I have the right content areas.
Based on my review of the literature, I will aim to incorporate the following demographic characteristics:
• 1M, 1F age 35-64, healthy/no serious chronic conditions
• 1M or 1F age 35-64 with one or more chronic conditions
• 1M or 1F age 35-64 with a physical disability that limits mobility
• 1M or 1F 65+, no serious medical issues
• 1M, 1F 65+ with one or more chronic conditions
• 1M or 1F age 35-64 with a progressive illness such as Parkinson’s disease or Huntington’s disease
I will aim to have some ethnic diversity, e.g., 1-2 respondents who are non-white, at each evaluation stage. I will aim to have some economic diversity, e.g., at least 1-2 respondents who are at or below the federal poverty level.
Because of overall access to information, I do not believe that it is critical to have strict guidelines regarding geographic representation, e.g., North, South, Midwest, West, and West coast. Given the small number of respondents, it is unlikely that any single person can represent an entire region. However, geography can affect the availability of end of life and other health-related services. Therefore, I will aim at each interview round to have at least one respondent from each of the following population regions: rural, metropolitan, suburban.
Respondent Protections and Compensation
Before the start of each session, I will advise respondents of the following regarding their rights and protections:
1. There are no right or wrong answers and no negative consequences can result from any answer the respondent provides.
2. The respondent can refuse to answer any question that makes him/her feel uncomfortable and the respondent can stop the interview at any time.
3. I will use the respondent’s answers to improve the website design and content; there is no opportunity for any of the respondent’s answers to be linked back to the respondent. All responses will be de-identified and stored in a secure file for future reference.
4. I will notify respondents once the website is live so that they will have first access to the site.
5. I will provide each respondent with a $40.00 gift certificate at the end of his or her interview.
Sample Interview Questions
Introductory questions (Website is closed)
1. How familiar are you with end of life decision-making?
2. What are the areas regarding end of life decisions with which you are very familiar? (Prompt if needed for legal, medical treatment, services, or resources). What are the areas that you would want to know more?
3. What do you expect from a website called End of Life Decision-making: Make the right choice at the right time?
Website questions (Website is open)
1. Looking at the website, tell me about what you think the purpose of the site is.
2. How appealing is the website homepage overall?
3. When you open the website, how well do you think the website content areas match the website title? How do the content areas (sections) meet or not meet your expectations?
4. How appealing is the layout of information?
5. How does the flow of the sections work for you visually? (Prompt for intuitive, jarring, confusing)
6. Please take a minute and use the links to get from page to page and from topic to topic.
a. Why did you select that link first? What made that link most appealing?
b. Did the links go where you expected them to go? Why or why not?
c. Did the link(s) go to information you expected to see based on the link? Why or why not?
d. What are the opportunities to make the links and related content work better for you?
7. Looking at the website content, does the website information seem accurate or trustworthy to you? Why or why not?
8. Are there other topics about of end of life decision-making you think are missing?
9. Do you know who wrote the website content and when it was written? How does it make you feel about the site’s accuracy when you know who wrote the content and when the site last was last updated?
10. How does the website make you feel about end of life decisions? (Prompt if needed for scared, reassured, or interested to learn more).
11. Did this website give information that would help you clarify your values and beliefs about end of life decision-making?
12. Would you return to this site for more information? Why or why not?
13. Would you recommend this website to others? Why or why not?
Wrap-up questions
1. Overall, what do you think are the 1-3 best features of this website?
2. What are the 1-3 things you think most need to be improved?
3. Is there anything else you would like to tell us about this website?
Conclusion
Thank you for your time today. Your answers will help us improve this website and in that way, help web site visitors make good end of life choices. You will be able to access this website on March 1, 2011 We also would like to thank you by providing you with this $40.00 Target gift certificate. If you have any additional thoughts or ideas about this website, please feel free to contact me at: xxx-xxx-xxxx.
Heuristic evaluation sessions
I will use two types of experts. The first type will be web design/content experts. The second type will be content experts in the field of value-based decision-making or ethics, end of life decision-making, and in the field of aging.
From the web design experts, I will ask them to evaluate my site on appeal and usability, applying known heuristics as relevant. One immediate question I have is the overall design—does it make sense. I will use website design experts at the mock-up stage to determine if my homepage design is adequate, or if there is a better format to use. I will also have the experts review the overall navigation scheme, layout, design choices, etc. I found reviewing website templates there are so many options and it is difficult to know if I have chosen good options for my site. I will use this expert feedback to inform the next iteration of the mock-up, which I will then review with the formative evaluation respondents. I will next use heuristic evaluation prior to rollout, after I have incorporated relevant user feedback from the formative evaluation.
I will engage content experts to review my website content before the mock-up evaluation. In this way, I will have assurance that my content is accurate, concise, and relevant. I will engage content experts after I make any substantive changes or additions to the website content. I will select content experts based on their expertise as indicated by their academic products, experience/recognition in the field, and/or academic standing.
Evaluation analysis and reporting
I will compile and analyze the formative and heuristic results using theme analysis. I will then prioritize and rank findings. I will incorporate improvement findings based on the importance of the finding and/or the ease with which I can incorporate the improvement.
Future Evaluation
Ideally, I would conduct formative evaluation six months after the website goes live, and then annually. As noted above, I will continue to engage content experts to review any substantive changes or additions to website content. I also incorporated a Feedback feature in my website. This link takes users to a brief survey. This survey includes both closed and open-ended survey questions to gather user feedback about expectations, usability, content, and suggestions for improvement. I will review, aggregate, and incorporate as relevant this feedback data monthly during the first twelve months of the website going live. I will then review and use the feedback data on a quarterly basis.
Website Rollout
Website success metrics
As noted in the Methods section, I will continue to conduct formative and heuristic evaluation semiannually for the first year, and then annually. Additionally, I will also incorporate the qualitative responses I gather through the website “Feedback” button or “Contact Us” buttons into all evaluation activities. However, I will address any major design or website performance issues immediately, or any other significant issues that arise.
Additional success measures that I will incorporate into my evaluation process are to monitor the number of website users, with an expectation that users will continue to grow, and to review the literature and establish metrics for expected number of users. I will then establish benchmarks for 6- and 12-month, and adjust these benchmarks based on my usage data.
“Softer” success measures that I will track are whether and/or the number of requests I receive from high-quality advertisers to place ads on my website, requests from other high-quality health related sites to be linked to my site, and requests from providers, policy makers, and decision makers to learn more about my website’s content.
Marketing plan
I will use a number of methods to market my website. I will announce the website through a press release that I will distribute across print media, to area/regional/national health plans, to area/regional healthcare providers and legal professionals, home care agencies and trade organizations, hospitals, medical societies, and other related organizations. I will also use social media to post the press release, and to promote the site. I will also rely on word of mouth.
Budget
Below I provide a very rough budget that addresses major cost areas to develop and to maintain the End of Life Decision-making website. Please note I have not included any general administration/overhead costs. I have used a general figure of $50.00 per hour for all personnel and content experts’ reimbursement. This budget does not include costs to formative evaluation participants, or the costs to secure meeting space and for refreshments. Annual costs to maintain and to evaluate the website are $22,000.
The estimated costs to design, evaluate, and continue to update the website based on evaluation results over the first year is $66,500. One person performing all the staff/evaluator functions would need to work about 25 hours per week during the first year. Eliminating most of the needs assessment and formative and heuristic evaluation activities would markedly decrease staff hours and costs. I did not include in this budget the cost to reimburse participants participating in focus groups or interviews.
|Area |Staffing |Design Phase |0-6-months |12 months |Annually |
|Web design |Professional Designer |80 hrs. |0-20 hrs. |0-10 hrs. |0-20 hrs |
|Needs assessment |Evaluator/staff |160 hrs. |NA |NA |NA |
|Formative evaluation |Evaluator/staff |160 hrs. |120 hrs. |120 hrs. |120 hrs. |
|Heuristic evaluation |Evaluator/staff; content experts|Staff: 80 hrs. |0-10 hrs. |0-10 hrs. |0-10 hrs. |
| | |Experts: 20 hrs. |0-10 hrs. |0-10 hrs. |0-10 hrs. |
|Marketing |Staff |80 hrs. |0-5 hrs. |0-5 hrs |0-5 hrs |
|Domain, website costs |NA |NA |NA |NA |$120/yr. |
|Content creation |Staff |200 hrs . |NA. |NA |NA |
|Updating/adding content |Staff |NA |80 hrs. |80 hrs. |240 hrs. |
|Website maintenance |Staff |NA |40 hrs. |30 hrs. |60 hrs. |
|Total staff/experts | |780 hrs. ($39,000) |285 hrs. ($14250) | 265 hrs. ($13250) |445 hrs. |
| | | | | |($22,500) |
Discussion
My competitive analysis found that none of the four competitor sites provided nuanced information about end of life planning or detailed descriptions or videos that explained in detail about life sustaining treatments. I believe that the End of Life Decision-making website contains information that is not readily available on the web. By addressing appeal and usability, those who seek out this additional end of life information will be able to find it. The quality of the information I provide on the website is rigorous, balanced, and up to date and enhances the website’s effectiveness.
Overall, I found that using a systematic and structured process to develop a new website is critical to achieving website appeal, usability and effectiveness. This process, which includes conducting a needs assessment, a competitive analysis, a technology and content analysis, and on-going formative and heuristic evaluations, allowed me to create a website that meets established standards and that meets the needs of its intended audience. Using this process is also likely to result in my website receiving the HONcode certification that indicates the website contains reliable information. However, I also discovered the limitation of my design skills. It is likely to be an efficient use of resources to engage a professional website designer to incorporate changes discovered through the formative and heuristic evaluation process.
My competitive analysis showed that it is likely many websites do not apply the process described in this paper. One reason for this failure could be that the process is staff and time intensive (and therefore costly). However, website developers should incorporate all of the steps described in this paper to ensure website success.
Personal Biography
My name is Mardi Coleman. I am a first year student in the Master of Science in Health Communication at Tufts University School of Medicine. My interest in developing this website arose from personal experience with my friends’ and family members’ ends of life and deaths. My interest also arose from previous work I have done in the areas of geriatric mental health, and more generally, my interests in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe.
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[1] National Vital Statistics Reports, 2009
[2] Frailty is defined generally as a state of high vulnerability for adverse health outcomes, including falls, hospitalization, physical disability, and mortality
[3] National Institutes of Health State-of-the-Science Conference Statement. (2004). National Institutes of Health State-of-the-Science Conference Statement on Improving End-of-Life Care, [Electronic Version]. Retrieved April 4,2010 from .
[4] Fox, E., Landrum-McNiff, K., Zhong, Z., Dawson, N., Wu, A., Lynn, J., et al. (1999). Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease JAMA, 282(17), 218-227.
[5] Kaldjian, L. C., Curtis, A., Shinkunas, L., & Cannon, K. T. (2009). Review article: Goals of care toward the end of life: A structured literature review. American Journal of Hospice and Palliative Medicine, 25(6), 501-511.
[6] The Joint Commission was formerly known as the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)
[7] Fox, S., & Jones, S. (2009). The social life of health information. Washington, DC: Pew Internet and American Life Project.
[8] Committee on Quality of Health Care in America: Institute of Medicine. (2001). Crossing the quality chasm: a new health system for the 20th century. Washington, DC: Washington Academy Press.
[9] Fox, S., & Jones, S. (2009). The social life of health information. Washington, DC: Pew Internet and American Life Project.
[10] This is a criteria because I will conduct my needs assessment and my evaluation activities using a convenience sample of Massachusetts residents.
[11] Feldstein, M., & Neal, L. (2006). Designing usable, self-pace e-learning courses: A practical guide [Electronic Version]. eLearning Magazine. Retrieved December 1, 2010 from .
[12] Ibid
[13] Heuristic evaluation [Electronic Version]. UsabilityNet. Retrieved December 4, 2010 from .
[14] Ideally, I would also evaluate the site at six- and twelve-months post rollout, and then annually.
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Figure 3: First mock-up, using a word table
Figure 4: Second mock-up, using PowerPoint
Figure 5: Third mock-up, using Wix, a free website design package
Figure 6: Final mock-up—Home page (mardcole/EndofLifeDecisionmaking)
Figure 7: Final mock-up—additional subpage
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