A Web Application to Support Recovery and Shared Decision Making
by Pat Deegan, Ph.D. Recovery to Practice E News January 26, 2012
CommonGround is a Web-based application created by people in recovery from major mental disorders. The program helps support recovery and shared decision making between the psychiatric practitioner and client. Currently, 10,644 people use CommonGround in public sector mental health clinics, ACT teams, peer centers, and inpatient settings in New York, Massachusetts, Pennsylvania, California, Oregon, and Kansas.
In clinics using CommonGround, efforts are taken to make the program accessible to people who may not have prior experience with computers. Typically, the waiting area is converted into a peer-run Decision Support Center (DSC). Clients arrive at a CommonGround clinic 30 minutes before their appointment with the doctor and are greeted by peer staff with a warm welcome, a beverage, and an invitation to use the Web application. Peer staff members support clients in using the software to complete a one-page, computer-generated health report, which is taken to the medication consultation. Following the consultation, peer staff are available for further support, such as finding local AA meetings or watching a multimedia tutorial on managing diabetes. Although peer services and medical services are billed separately, the “enhanced medication visit” is experienced as a single, seamless appointment.
The role of peer staff is central to the CommonGround approach. They have had firsthand experience with recovery and are trained to support clients using CommonGround. They also help clients use the online recovery library to access information. Perhaps most importantly, peer staff take time to listen and provide support.
Peer staff members strive to maintain their unique role, but also become valued members of the medical team. After one-on-one time with the doctor, practitioners often seek out peer staff to perform a variety of tasks that cannot be completed during the 15-minute consultation. For example, to help a client remember to take medication, a peer staff member might work with him or her to set up reminders.
CommonGround is user friendly, relevant, and accessible. There is a wide range of general, health, and computer literacy levels among people who use psychiatric medication clinics. On average (in our experience), clients use CommonGround at nine out of ten appointments, despite disability. Touch screens eliminate the need for typing, though if preferred, a mouse and keyboard can be used. Headphones are available, so clients can read or listen to the CommonGround application. The survey is also being translated into Spanish and, whenever possible, recovery library videos and documents are available in Spanish.
The main tool used by clients in the DSC is the Web application. It can be accessed through a computer with a modern Web browser and high-speed Internet connection. The program can be used from the clinic or from remote sites, such as a home or public library, allowing mobile outreach teams and ACT teams to use it in the field. People can also access the online recovery library from home or in the community.
The CommonGround Web application has a number of components, including a survey, database, recovery library, health report, shared decision report, “graph my recovery” function, and module that displays aggregate data on usage statistics. It also has a number of views, depending on the user’s role. Clients have their unique view of the application, as do peer staff, medical staff, administrators, and support staff, such as therapists and case managers. Although each user group has its own unique perspective on the program, complete transparency is maintained: what the doctor can see, the client can see, and what the client can see is available to authorized members of the individual’s treatment team.
The heart of the CommonGround application is the survey. Clients complete the survey each time they have an appointment. Their responses are organized in a succinct, one-page health report, which is printed and taken to the prescriber meeting.
Clients move through the survey in a linear fashion, answering questions about their mental health recovery, current symptoms, use of and concerns about prescribed medication (such as side effects), and goals for the appointment. In effect, they answer important questions prior to seeing the doctor, so during the precious 15-minute visit, the dyad can focus quickly on already identified areas of concern. While taking the survey, clients have the opportunity to view 3-minute video vignettes in which real people describe various aspects of their recovery. For instance, in one video, a person describes finding a new church that was more tolerant of her mental health diagnosis. Another person talks about how she got clean and sober and returned to work. These videos offer hope for recovery.
Each survey is also individualized to include three types of Personal Medicine and a unique Power Statement. Personal Medicine includes the things people do to get well and stay well, such as keeping a vegetable garden, caring for their children, or going to work. In the CommonGround approach, we talk about Personal Medicine (what we do) and psychiatric medicine (what we take) working in harmony to support our recovery. Secondly, clients create a Power Statement that appears on the survey each time it is completed. A Power Statement is a succinct statement that conveys an individual’s goals for using psychiatric medicine, such as
“Taking care of my 3-year-old daughter is the most important thing in my life. I need lots of energy to keep up with her. I want to work [together] to find a medication [that will] help me focus on my daughter, not my voices, and to stay out of the State hospital. But the medicine can’t make me too sleepy!”
As the survey comes to a close, the software generates two suggestions for the individual based on his or her responses. For instance, if someone indicated he was struggling with auditory hallucinations, the Web application could generate this suggestion:
“You might be interested in learning more about how to use headphones to cope with distressing voices.”
If the person agrees, he can access a Personal Medicine Card to take home detailing a strategy for using headphones to manage the upsetting voices. Another example might be a person who indicated she was struggling with urges to smoke after quitting. The program would ask if she would like to access a multimedia tutorial on coping with those urges. At that point she could watch the tutorial, wait until after seeing the doctor, watch it from home, or watch it with a case manager or peer staff member later on. Finally, in the event a person did not like the automatic suggestions, he or she would have full access to the personalized electronic health report. Each item on the report, such as hearing voices, trouble making copay for medicine, trouble concentrating, etc., is a link, which when clicked leads to non-industry sponsored information and recovery strategies. A person could click on the name of a prescribed medicine and go directly to a consumer-friendly fact sheet about that drug.
Medical practitioners can also view an individual’s health report on their computers. After reviewing the health report with clients, the dyad explores options and arrives at a shared decision about the next steps in treatment. A shared decision is written from the client’s perspective and printed to take home. An example of a shared decision looks like this:
“I will take the antipsychotic medicine once a day and it may help with paranoid feelings. To help more with these, I will rearrange my closet so it doesn’t look like there is someone hiding in there. I will also avoid negative people in my neighborhood, which will help me feel less afraid.”
Case managers, therapists, and other treatment team members also have access to the health report. The report amplifies the voice of the client, helping the team become more person centered. It allows them to focus on individuals’ expressed concerns and goals, while linking them to non-industry sponsored information and interventions that support recovery. Additionally, all users (including clients) can use the data exploration and graphing functions to explore recovery trends over time. For instance, one could view a graph of sleep quality over the past 6 months, then compare quality of sleep to drug/alcohol use to see if any patterns emerge.
CommonGround also has a module that displays usage data. This feature allows researchers and administrators to assess data trends and determine whether the program is being used with fidelity. Some fascinating findings have included the following:
Between August 2007 and December 2011, more than 30,000 health reports were completed using the CommonGround Web application.
Psychiatrists and nurses in the public sector can participate in shared decision making as evidenced by more than 50 percent of completed health reports, with a corresponding shared decision made over 52 consecutive months. Some clinics have reported consistent shared decision making rates as high as 94 percent.
In the 30,000 health reports completed, on average consumers report two concerns about prescribed psychiatric medication during each visit. Across all sites, in all months, the top three concerns have related to the medicine being “unhelpful,” how it affects the consumer’s health, and side effects.
As measured by independent analysts, client satisfaction with medication increases with the use of CommonGround and remains high on a second survey taken at 36 months.
CommonGround seems to act as assistive technology, helping people with psychiatric disabilities tell their complex stories in reports that can be quickly reviewed by medical staff.
There are challenges to using this innovative Web application, including technical concerns like limited computer access, Internet access, and computer illiteracy among staff. Some medical staff struggle with buy-in and feel overwhelmed by existing duties, not to mention the addition of a new task to their workflow. Organizations are also under increasing financial stress. The monthly fee to use the application is nominal, but funding peer staff salaries is a challenge, especially in States where peer staff cannot bill Medicaid for their work.
Pat Deegan is creator of CommonGround. She is an independent consultant specializing in recovery and the empowerment of people diagnosed with mental illness. Contact her at firstname.lastname@example.org or visit www.patdeegan.com.
Watch a video about CommonGround at http://www.patdeegan.com/commonground.