health information

Kaplan University School of Health Sciences

HI501 Health Informatics

1

Unit 5 Assignment Instructions

Personalized medicine is an innovation in the care and treatment of patients that brings to the forefront the unlimited possibilities of health information technology when utilized to its fullest.

Read the case study, and then write a 3–4 page paper, answering the questions that appear at the end. Cite sources when necessary, following APA formatting principles.

Meet Frank

Frank is an attorney nearing retirement in Hawaii. He is a lifelong swimmer and surfer accustomed to being strong, not just physically, but as the patriarch of the family. Frank’s health story started 3 weeks ago when he noticed a significant change in his ability to paddle during his surf sessions. He noticed that he did not have the energy to enjoy swimming and paddling in the ocean. He thought maybe this lack of energy was simply a sign that it was time to stop working soon, but his wife Keiko nudged him to see his physician for his annual visit. After blood tests, his physician ordered a magnetic resonance image (MRI) and a computed tomographic (CT) scan. When the physician called to say it was stomach cancer, Frank was grateful that his wife was not home to see him fighting back the tears. His physician instructed him to meet with the oncologist in the morning to discuss all possible treatment options.

Frank and Keiko met with Dr. Jones, the oncologist, for the first time the next day. Thank goodness Keiko was taking notes, because Frank simply could not process all of the information. Frank equated the experience to surfing at Waimea during the winter; it was difficult for him get oriented, and it was difficult to take a breath before the next big wave hit. Dr. Jones ordered several more tests, including a painful bone marrow sample.

The next day, Frank and Keiko visited Dr. Jones again to review possible treatment options. They discussed two variations on chemotherapy and radiation. Dr. Jones advised Frank to begin treatment as early as possible. Frank was still in shock but wanted the cancer gone; consequently, he agreed to think about it over the weekend.

He and Keiko called their son, Kenny, to give him the news and to ask him to come over for dinner. They discussed the treatment options with Kenny and his wife, who is a dermatologist. Although she may not be a cancer expert, she is a physician and she is family.

Frank began to scour the internet, reviewing the various health-related sites, reading about the experiences of others with their treatment options, and trying to decide which treatment would work for him. Although he became overwhelmed with all of the information online, he understood that he was supposed to start treatment soon. His biggest worry was making the wrong decision—once you have paddled out to the wave, you just have to ride it down.

FRIDAY When Frank and Keiko see Dr. Jones, she states, “I know a diagnosis like this is pretty overwhelming. I am going to record our conversation and give you some tools to help you manage everything. You will be able to refer back to this recording in your electronic health record.” From Dr. Jones’ view of Frank’s electronic health record, she initiates new patient instructions and selects the two treatment options she wants Frank to consider. Frank has a large tumor in his abdomen; therefore surgery is one option and radiation is another. Both treatment regimens will require chemotherapy. Dr. Jones records the conversation as she discusses the next steps with Frank and Keiko. Dr. Jones looks for the first available surgical consultation appointment for Frank and selects

Kaplan University School of Health Sciences

HI501 Health Informatics

2

10 a.m. on Monday with Dr. Chang. Dr. Jones schedules a follow-up appointment for Frank with her for 2 p.m. and says his course of treatment would need to be decided at that time. The appointments are sent to Frank’s tethered personal health record calendar, and Dr. Jones sets up Frank and Keiko to receive electronic invitations to PHR Plus (hereafter referred to as Plus) to enable them to take advantage of the additional online educational tools, mobile applications, and social support network.

After Frank’s discussion with Dr. Jones, she performs one last diagnostic test, a needle biopsy on his lymph node. Afterward, Frank and Keiko head to the beach to decompress for a while. Frank opens the Plus invitation once they get home. He finds it easy to register, especially since he does not have to reenter information about his medical history; rather, he is able to choose certain information from his tethered personal health record to auto-populate information into his Plus profile, including his new diagnosis of stomach cancer, past and current medications, upcoming appointments, and his recent test results. He sees that Keiko’s access to his profile is pending his permission. He chooses full access, of course. Meanwhile, Keiko has received her own invitation, offering her the opportunity to register as a member of Frank’s care team with access to a few options for caregiver support. Frank’s profile screen shows him a very simple view of a few things:

Resources: His recent diagnosis is displayed with access to trusted content from selected sources. He chooses a renowned cancer center and MedlinePlus as his preferred sources. He also sees links to other patients with experiences similar to his for him to view when he is ready. He is relieved to see all of this information organized in one place.

Treatment Options: The two treatment options are also viewable: surgery plus chemotherapy or radiation plus chemotherapy. For each option, he can access an outcome summary for patients similar to him, based on the clinical data he sent over from his tethered personal health record; the content about the treatment from his preferred sources, information from other patients who have his type of cancer; and information about those who have written reviews for both treatment options— including information written by patients about their experiences before and after the treatments. He can also view information about the symptoms and side effects they experienced, as well as the patients’ feedback on their quality of life during and after the treatments.

Care Team: Both Dr. Jones and Dr. Chang are listed on his proposed care team. In addition, he can see specific information about each physician, including patient reviews and a list of their education, training, experience, and outcomes related to their specialties. He also sees the transcript and audio version of the conversation he had with both physicians earlier that day.

Appointment Schedule: His upcoming appointments are listed. Journal: He notices a journal section where he can make comments and share information with

others. Frank decides to review the cancer center’s material about stomach cancer. At this point, he

decides that this material is about all he can absorb for now. He will look at the other information later.

After lunch, Frank and Keiko call Kenny and ask him over for dinner. That evening, they review the treatment options. Kenny’s wife, Debbie (a dermatologist), asks specifically about what Dr. Jones said. Frank pulls out his telephone, accesses his Plus account, and replays the conversation for them, which was so much easier than trying to remember it all. Frank then gave Kenny and Debbie access to his Plus profile but limited it to only the information about his new diagnosis.

SATURDAY

Frank and Keiko sit down to look at the treatment options together. The Plus treatment options show that the two treatments have similar outcomes for his specific type of cancer; therefore it really

Kaplan University School of Health Sciences

HI501 Health Informatics

3

comes down to which treatment plan will be less miserable to go through and which plan will result in the fastest time to recovery. They look at the summary of risks and patient-reported side effects. Frank and Keiko have many questions about this next step: How long is the treatment? What will recovery look like? Will Frank be able to work? Surgery appears to be more painful and has more risks; otherwise, however, it has fewer physical and cognitive side effects. As Frank and Keiko explore and prepare for Monday’s appointments, they flag a couple of topics to ask the physicians. The system is keeping a running list of their questions to enable them to be prepared for the upcoming appointments. As they explore, Plus offers some other things to consider when making decisions. When they look at the category of surgery, it offers to show them a video of the surgical procedure and instructions for preoperative and postoperative care, the surgeon’s success rates, percentages of complications based on Frank’s demographics, and patient experiences and reviews of the surgeon. It also suggests questions to ask the physicians. Keiko sees a good question that she had not thought of previously and sends it to their running list.

Frank needs a break. He e-mails his assistant that he will be out sick for the week and will update her as soon as he can. He takes a walk outside for some fresh air. Keiko takes a few minutes to cry—her first opportunity since this ordeal began. She looks at her caregiver resources and sees some information on helping a loved one make a decision. She feels helpless, since Frank really needs to drive the decision, but perhaps this article will help her get a handle on things.

Meanwhile, Kenny’s wife, Debbie, logs into Plus and is able to view Frank’s diagnosis; his treatment options; his next appointment; and the MRI, CT scan, and laboratory results. Debbie calls her medical school roommate, who is an oncologist, to ask a few questions and to review her father- in-law’s options for treatment. That afternoon, Debbie calls her in-laws and says it looks like Dr. Jones is doing all the right things. Debbie suggests another question to ask on Monday. Keiko agrees that it is a good question; she pulls out her telephone and asks Plus to add Debbie’s question to their list.

MONDAY

At 10:00 a.m., Frank and Keiko see the surgeon, Dr. Chang. She pulls up Frank’s record and sees the list of questions Frank and Keiko have flagged. She starts by telling them the lymph node biopsy provided more specific biomarker information, which tilts the scales toward surgery as the safer bet. She shows them the data, which now reflect a clear advantage to surgery. Dr. Chang continues to answer the other questions they had flagged, although she refers one to Dr. Jones. Keiko, not entirely trusting that the physician will cover everything, looks at the question list on her telephone and uses the telephone to record the conversation. She sees the telephone is parsing the conversation on the fly to create written notes. Dr. Chang tentatively schedules Frank for a surgery slot the following week; these data automatically appear in his Plus profile and go to Frank and Keiko’s calendar. After talking over things at lunch, Frank and Keiko meet with Dr. Jones. Keiko refers to the question

list again and gets an answer to the last big question. Dr. Jones had a video chat with Dr. Chang before Frank’s visit and agrees that surgery is now the better option. Based on this information and the positive reviews from other patient experiences on Plus, Frank is OK with this decision and feels confident about his interactions with Dr. Chang. Dr. Jones reviews the overall plan and the dates of the surgery, follow-up, and chemotherapy regimen after surgery. The plan is now visible on Frank’s Plus profile, and the appropriate calendar appointments appear for Frank and his family members.

Kaplan University School of Health Sciences

HI501 Health Informatics

4

Kenny gets a status update on his telephone that a plan is now in place and reviews it with Debbie that evening. Along with the plan, other patient education materials are available that answer many of their factual questions; as a result, the burden does not fall on Frank. Frank sees that Plus is offering a surgical preparation list, including content from the cancer center about what to expect and other patient tips that have been voted most helpful. Frank and Keiko tell a larger circle of friends of Frank’s condition and invite them to join their ad hoc network on Plus, which allows Frank and Keiko to update them with minimal effort. Keiko receives a prompt on her account asking if she would also like to set up a space for a “helper team.” This feature allows friends to volunteer to supply dinner or assist with house chores such as lawn care, laundry, and cleaning, among other tasks. Keiko likes this idea and gets it started.

The night before surgery, Keiko reviews the checklist to ensure they have everything. Oh, right— they should bring Frank’s telephone charger for his stay in the hospital. The physician would not think to tell them that, but other patients provided the tip.

After surgery, Keiko’s Plus account notifies her that Frank is now in the intensive care unit (ICU) and that a text message has been sent by the surgeon saying that all went well. The message instructs her to meet the surgeon and Frank in the ICU in 30 minutes. Immediately, Keiko gets ready to update everyone via her Plus network and sees that the system offers her some typical content to attach, such as hospital visiting hours, Frank’s room number, and a generic description of the kind of surgery he just had. She thinks people will find the information useful so she adds it to the message. The updating feature proves to be very helpful over the next few days while Frank remains in the hospital, making it so much easier to reach everyone at once.

Frank returns home, and his recovery is expected to be approximately 2 weeks. During the first couple of days at home, he gets a prompt from Plus to answer a few simple postoperative questions on his general health status. Based on his responses and uncomplicated recovery, the questions decrease to every few days after the initial questions. Based on his answers, Frank, his physicians, and his family and friends can see that his recovery is on track.

Since Frank is still recovering from surgery, he and Keiko video chat with Dr. Jones and review the start of chemotherapy in a few days. Plus sends them a tip list about preparing for chemotherapy that not only includes Dr. Jones’ instructions but also includes helpful patient tips such as being sure to wear comfortable clothes and to bring some reading materials or music. Frank is getting anxious about the chemotherapy experience; consequently, he looks at a few patient stories. He is comforted as he reads their experiences and feels better prepared for his first day.

CHEMOTHERAPY WEEK 1

Frank has his first chemotherapy session. He feels terrible afterward and cannot do much for a few days. He has a complicated medication schedule, but his Plus calendar helps keep him on track about which medications to take and when to take them. His profile updates show him a list of expected side effects and ways to handle them. He looks at what people are doing to treat constipation. One food looks useful, so he suggests it to Keiko.

Friends and family who have been given access to his Plus profile can see Keiko’s update on Frank’s progress, as well as some informational content such as a reminder that Frank is vulnerable to infection and a description of what he is likely to need right now. As people in Keiko’s life offer to help, she sends them invitations to the helper team space, where they can see that meals this week are Keiko’s top priority.

Kaplan University School of Health Sciences

HI501 Health Informatics

5

CHEMOTHERAPY WEEK 2 (OFF) Frank needs to schedule follow-up blood work at a local laboratory; therefore Plus shows him the most convenient ones. Once the results are available, Dr. Jones sends a message to Frank and Keiko saying that all the results look good. He asks that she push the results from his electronic health record into his Plus profile so he can see them next to previous results. Once they are in Plus, he can also see the explanations displayed on the screen next to each result, which helps him better understand what his results mean.

His Plus feed continues to offer information about what to expect during treatment along with tips for recovery, saving energy, and talking to adult children about the illness, among other tips. He also sees an alert on the screen with information about an influenza outbreak in his area, suggesting that he be extra cautious. He is prompted to answer a quick question about whether the tips for managing his constipation were helpful and whether he needs any specific help from anyone on his care team.

CHEMOTHERAPY WEEK 3 (OFF)

Frank is finally starting to feel his strength come back and is able to respond to e-mail, read supportive messages, and post an update of his own since Keiko has been doing it for him the last 2 weeks. As the next chemotherapy round approaches, Plus gives him another preparation list and asks him about other side effects, enabling his physician to be aware of anything problematic before his next treatment.

Frank goes in for chemotherapy and has a blood test. His white blood cell count is too low for the next round of chemotherapy. He is rescheduled for 5 days later; Plus updates his schedule and sends him content about self-care with a low white blood cell count and what it means to have to postpone treatment. His Plus feed notes that, with the adjusted schedule, he will be at a functional low over Christmas and suggests that he might want to talk with his physician about the possibility of making an adjustment to the timing of treatment so he can enjoy the holidays with his family. Frank sends a message to Dr. Jones via Plus to ask about that possibility—Christmas with his family is his favorite time.

Plus has been learning about Frank’s patterns and behaviors on the site and is no longer pushing new tips at Frank, unless he has not yet seen some helpful timely patient tips. He still gets preset medication and other reminders.

As chemotherapy progresses, Frank starts to feel mentally foggy, and it gets harder to focus on work during his off weeks. Although he is frustrated, at least he is not surprised. He had subscribed to a few Plus forum threads about chemotherapy effects, and this very issue is discussed quite a bit. He revisits these posts to review others’ tips for handling it and to see how other people deal with the frustration of not feeling themselves.

AFTER CHEMOTHERAPY At the end of chemotherapy, Dr. Jones reminds Frank to return for a checkup in 3 months and sends an invite to his Plus private messaging to e-mail her at any time with questions or concerns. She also sends her video chat schedule in case he would prefer a face-to-face conversation.

Plus serves up information about what to expect at the 3-month post chemotherapy follow-up visit. It also offers tips for transitioning back to work and getting strength back. Frank sees that many people find physical therapy (PT) helpful. Because he wants to return to surfing, Frank sends an e- mail to Dr. Jones asking about a PT referral. The physician reviews the comparative effectiveness results of PT for patients similar to Frank and sees a clear benefit in the data that report 74% of

Kaplan University School of Health Sciences

HI501 Health Informatics

6

people similar to Frank recover more quickly and have fewer secondary issues when engaged in a program of cancer rehabilitation PT. Frank obtains approval for PT and sees that the information has already been pushed into his Plus profile, based on his previously set preferences for data exchange. In his profile, he views the therapist he will be seeing and notes that the therapist now appears as part of his care team. He enjoys the rehabilitation program and working with the therapist to set goals. Frank keeps a record in his Plus profile so he can graphically review how he is progressing with his program. He also sees a few other Plus members who have signed on to cheer him along.

Before Frank’s 3-month checkup, Plus reminds him what to expect from the visit. Now that he is past the worst of his recovery, Plus gives him a chance to add tips of his own, mentor someone, or tell his story. It also shows him that Tom in Honolulu has a question about going through chemotherapy. Frank thinks, “Sure, I can answer that.”

Just as cancer begins to fade into the background, Plus goes from being the hub of his care and support to just another tool Frank uses now and then. The system seems to have gotten smarter about what he might need or want to see from patients similar to him. He is interested in monitoring his overall health with a vitals sensor that automatically sends his data into his Plus record and electronic health record. He really likes to see this information graphically—especially since he is doing so well. Visits with his primary physician are enhanced with these data and available for review before an appointment. Frank and his physician can use the limited time they have to focus on the things that matter. A year later, he sees a prompt on his telephone from Plus asking him to answer a few questions on the long-term side effects of his treatment. He takes a few minutes to share his side effects to enable others to benefit from his experience.

For the most part, though, Frank is thinking more about his next court date and whether the surf is going to be good tomorrow.

 Personal Health Records provides patients and medical professionals a means to share

information, which in turns, helps to improve the quality of care. This type of technology requires technology access, and some patients do not have that. How can health care bridge the gap between those who are internet savvy and those who are not?

 What demographic and socioeconomic factors affect eHealth access and literacy?

o Complete an internet search to determine what efforts are being made in healthcare to address these factors?

 Consider the following, in thinking about a PHR that patients can use to annotate their EHR data (e.g., comment on the problem list), what steps do you think patients will likely take to correct their data?

o What do you think the advantages and disadvantages of such a system would be?

Put your responses in a Microsoft Word document. Save it in a location and with the proper naming convention: username-Course Name-section-Unit x_Assignment.doc (username is your Kaplan username, section is your course section, x is your unit number). When you are ready to submit it, go to the Dropbox and complete the steps below:

1. Click the link that says “Submit an Assignment.”

2. In the “Submit to Basket” menu, select Unit x: Assignment.

3. In the “Comments” field, make sure to add at least the title of your paper.

Kaplan University School of Health Sciences

HI501 Health Informatics

7

4. Click the “Add Attachments” button.

5. Follow the steps listed to attach your Word document.

To view your graded work, come back to the Dropbox or go to the Gradebook after your instructor has evaluated it. Make sure that you save a copy of your submitted work.

Unit 5 Assignment Grading Rubric = 60 points

Assignment Requirements Points

possible Points earned by student

Described how health care can bridge the gap between those who are internet savvy and those who are not.

0–10

Explained the demographic factors that affect eHealth access and literacy.

0–10

Explained the socioeconomic factors that affect eHealth access and literacy.

0–10

Explained the steps that patients will likely take to correct their EHR data.

0–10

Described the advantages of a system that allowed patients to correct their EHR data.

0–5

Described the disadvantages of a system that allowed patients to correct their EHR data.

0–5

Paper is the proper length 0–5 Paper formatted in APA format 0–5 Total (Sum of all points) 60

Points deducted for spelling, grammar, and/or APA errors.

Adjusted total points