It’s encouraging to see the growing trend in patient advocacy and personal involvement as reported recently in USA Today and the Wall Street Journal, the later focusing on patient’s that are actively tracking their health.
There are several studies being run at medical institutions across the United States that have patients record their “Patient Reported Outcomes” or “Observations in Daily Living”. Project Health Design oversees the studies, and is a program that “explores practical ways to capture and integrate patient-recorded observations of daily living (ODLs) into clinical care.” What’s encouraging about these studies is that it confirms that health care professionals value this information. They want to understand how patients are reacting to treatments so they can provide the best care management.
We’re seeing that cancer patients understand the value of tracking their health as they use Navigating Cancer’s Daily Health Journal and Prepare for Doctor Visit reports. We’re also seeing that oncology clinics value this information as evidenced by their willingness to invite their patients to Navigating Cancer to track their health electronically. When communicated effectively to their health care team, a patient’s daily observations can make the difference in receiving the right interventions to effectively manage their care.
Patients who track their health just a minute a day using our Daily Health Journal can print summary reports in advance of their next doctor’s appointment that graphically show how they’ve been responding to treatment. This can make a huge difference in the care they receive as doctors can now make recommendations based on clear, factual data.
For patients “an entry a day helps you know what to say” and that can really improve their ability to communicate with their health care team.
Patients: has tracking your health helped you communicate better with your healthcare team? If you aren’t tracking your health, why?
Health care professionals: what’s your take? Is this valuable information?
Cancer Blog roundup for week ending August 27
photo credit: dbdrobot on flickr
We’ve been making a point to keep tabs on the cancer blogosphere so we can share with you some of the most interesting and engaging posts from cancer patients, survivors and caregivers. Post comments below to let us know what you think of this week’s roundup, or post a link to your blog if you’d like to be added to a list of blogs we follow.
- In her post, Good News and a Pain in the Boob, Cathy Bueti discusses a less-than-pleasant mammogram experience and ponders how to speak up during a bad experience at the doctor’s office.
- Dr. Wendy Harpham has an interesting post on steps clinicians can take to make sure chart notes are healing – or at least not harmful – to patients who choose to review them.
- The blog Positive About Negative has news about a recent report that says blueberries can control tumor growth, decrease metastasis, and kill the cells of triple-negative breast cancer.
- Cinco Vidas addresses the tough question of what to expect when death is near for terminal cancer patients.
- Stephanie of Bah to Cancer looks at a recent article that reveals the risk of lymphodema being brought on by flying in breast cancer survivors is in fact extremely low.
We made some improvements today to the home page design. Below is a screen shot and overview of those changes as they relate to supporters.
- The green box on the right tells you that you are a supporter and provides a link to change your role to be a survivor if your status changes, or to invite friends to join Navigating Cancer.
- If you have no connections, an invitation form will be displayed below your recent activity feed.
- If you support a cancer survivor, as in the example below, you will see a box showing the avatars of the people you support, the last date they signed in, and any updates. A link takes you to their profile.
A new page w
e added today is Connections, which is located in the Your Community green navigation box on the left side of the page. This is where you can view and manage all your connections on Navigating Cancer. Below is a screen shot of the page, with an overview of it’s features.
Connections Page Features
- The top green Your Connections box shows everyone you are connected to.
- Hovering over their avatars lets you remove them from your network.
- Clicking on their avatars takes you to their profile.
- You can invite others to join your support network on Navigating Cancer.
- If you are connected to other survivors (formerly patients), each survivor will have a box below the green box that also shows their connections. Your own avatar will show up first in their list of supporters. This reinforces that you are part of a team caring for that person. You can invite others to support those survivors.
If you’re a member of Navigating Cancer, click the link to view our new Connections page, or join today.
Today we added a new feature to the clinic home page. Clinic staff admins can now enter a message and add a list of directives that will be added to their patients’ home pages. This allows clinics to have a presence on their patient home pages, and let them know about any important news or tasks that should be completed before their next appointment.
New clinic home page screen shot
To include a message or directions to patients, click the edit link at the top of the page and fill out the information below. Note than there are two fields to enter custom directions.
Today we made some improvements to the Profile page, located in the green navigation box titled Your Community. This is where you can view your profile to see what information is shared with the people you are connected to, and what information is shared with the public (people your aren’t connected to). Below are before and after screen shots with an overview of the changes.
Old Profile Page
Profile Page Improvements
- View Profile link in Your Community navigation has been changed to Profile.
- Many of the features that were on the previous View Profile page have been moved to the new Connections, Support Network and Home pages. What is left is the ability to see how you look to other people, both your public profile and how your profile looks to your support network.
- We added a clarifying green header to explain which profile you are viewing, a link to your other profile view, and a link to change your profile settings.
New Profile Page
Today we made some improvements to the Support Network page located in the green Your Community navigation box.
Previously, this page listed everyone in your Support Netowrk.
Old Support Network Page
The new page lists everyone in your Support Network, all of the Notes they’ve left on your profile, and your upcoming Needs and Events. If you have not selected a custom URL, you are given a link to set one up.
New Support Network Page
Today we released a new design for the member home page. This is the page you see once you log in.
The changes are unique based on the role you selected when you registered (survivor, supporter, caregiver, professional). Note that if you previously registered as a patient, you are now considered a survivor in a journey phase based on the information you’ve entered into your profile.
We encourage all cancer survivors to enter their journey phase when updating their patient info (click diagnosis) as the site has been developed to provide a custom experience based on what type of cancer you have, what stage you’re in, and where you are in your cancer journey (testing, treatment or monitoring).
In addition to the member home page improvements, we’ve also made changes to the following pages. Click the links to get more details about the specific changes made to each page.
- New Connections Page
- Updated Profile Page
- Updated Supporters Home Page
- Updated Clinic Home Page
- Updated Support Network Page
Home page changes that apply to all members
Below are screen shots from the old home page and the new home page. Design improvements include:
- The Tips and Suggestions box on the top left of the page has been removed. It will soon be replaced with a “What’s Next” box that will guide members through next steps in using the site based on your role and the information you’ve entered in your profile.
- On the right hand side of the home page, the calendar box titled Health Journal Entries has been removed.
- The Upcoming Needs and Events box is now called Your Schedule, and shows a list of actions to take including events, appointments and medications that are past due, or are coming up in the near future.
Old home page
Improvements for Survivors
- Your cancer type, stage and journey phase are displayed in a graphical box; with a link to your settings to change these.
- Your Support Network box shows you your last update to your support network and allows you to add a new update (it used to be part of the activity feed). You also have a link to your new Support Network page.
- If you are a member of a clinic with a profile on Navigating Cancer, your clinic now has a box on the top left of your homepage where they can post a message and actions they’d like you to take.
New Home Page
Our fearless leader, Gena Cook, was interviewed on KING5 TV’s morning news program today. It was a great opportunity to show off some of the site features that benefit cancer patients and their health care team, specifically the Daily Health Journal and the Prepare for Doctor Visit tools.
Great job Gena!
Nurse Navigators: Dedicated professionals that help cancer patients navigate their care
We at Navigating Cancer are proud of the work we do each day to provide cancer patients and their loved ones tools to organize and better communicate with the people that matter most to them: their health care team, friends and family and other like patients. Because a cancer diagnosis can be so confusing and overwhelming, organizational tools like ours are increasingly becoming more important, but nothing replaces the importance of the face-to-face interactions that patients have with their health care team.
In recent years, many patients have added a new member to their health care team. Nurse navigators are a new sub-specialty in the nursing field that help cancer patients navigate the medical and psycho-social maze that accompanies a cancer diagnosis. The National Coalition of Oncology Nurse Navigators (NCONN) is a new non-profit of oncology nurse navigators across the United States that is leading the charge in establishing standards that define this new role. In addition, they promote excellence in oncology patient care by fostering collaboration between oncology nurse navigators and the patient’s entire health care team.
The second annual NCONN conference titled “Changing the Face of Cancer Care: Patient Navigation, Here and Now” will be held October 8-9, 2010 at the Hilton Branson Convention Center in Branson, Missouri. We’re excited about their upcoming conference and think you should be too. Click the link to get more info and register for the NCONN conference.
Navigating Cancer and NCONN have been collaborating to help cancer patients, and we’re proud to be associated with them and their individual nurse navigator members. We’re excited about the work they do to help better coordinate care and support for cancer patients.
