Kate Reed MPH, ScM, CGC, National Coalition for Health Professional Education in Genetics (NCHPEG), introduced the topic, moderator Joseph D. McInerney, MA, MS, NCHPEG, and the panelists: 1) Amanda Bergner, MS, CGC, Johns Hopkins University; 2) Jayne Dixon Weber, National Fragile X Foundation; and 3) Ben Heywood, MBA, Patients Like Me. The panel discussed the following questions: How should we choose appropriate information for the audience? What is the best way to organize the information for maximum effectiveness? Given the volume of emerging information and the multiple ways to access it, these two issues of content and organization are inexorably linked.
Theory: How Do People Think About Information?
Amanda Bergner discussed how patients perceive medical information related to their diagnosis. She introduced grieving as part of the process of understanding a diagnosis.
It is important to remember that each individual patient may experience different levels of fear or anxiety, and that receiving a diagnosis can be very painful. To better understand a patient’s reaction to a diagnosis, genetic counselors use theories of grief and mourning. Understanding a scientific concept and actually hearing a diagnosis for the first time are entirely different experiences. The latter experience often involves “giving up an understanding of who you thought you were or who you didn’t think you were.” Grieving is natural and common.
Bergner explained that people grieve in different ways that can impact their understanding and perception of information. While grieving styles can be imagined to exist on a continuum, Bergner asserts that two types of response fall at the ends of the continuum:
- Instrumental grievers are “doers” who process grief by actively responding against the diagnosis, with “a voracious appetite for information.” Providers may assume that these people are coping well because of their orientation toward information, but this is not always the case. Accumulating information can be a means by which they avoid the emotions arising around receiving a diagnosis.
- Intuitive grievers are information-averse, and they direct their energy into emotions. They are not often well-equipped to process detailed information, and often respond to new information by crying or wanting to talk. They need to connect with others to process what the diagnosis means to them.
There are generally two phases to any patient’s processing of this medical information, no matter where she is on the grieving spectrum:
- The “deconstruction” phase is a vulnerable time when people give up their prior sense of self. Typically during this period patients do not want any new information because they are undergoing a critical psychological transition.
- The “reconstruction” phase signals the beginning of patient’s receptivity to new information. The patient becomes “more rational” and seeks information that will help him understand the diagnosis better.
Healthcare providers who focus on the content of the diagnosis rather than recognizing the emotional impact on the patient will miss the opportunity to establish effective communication at a critical point in the patient’s life and in the provider-patient relationship. Therefore, when diagnosing a genetic disorder, whether the provider is expert or poorly versed in its details, it is important for that provider to focus more on the patient rather than the diagnosis. This will provide a foundation for future communication with the patient as he moves forward into the period of acceptance.
Practice: What Advocacy Groups Need to Communicate
Jayne Dixon Weber has a son who was diagnosed with Fragile X syndrome 20 years ago. As a parent and lay expert she discussed how to best present information to patients and caregivers through a disease advocacy organization website, using the National Fragile X Foundation’s website as an example.
Dixon Weber was pregnant with her second child when she received a diagnosis for her first child’s condition. Like Vocke of PXE International, she had the necessary personal skills to navigate the diagnostic odyssey efficiently. Being an engineer, Dixon Weber was comfortable processing complex scientific information and communicating with experts in a way that increased the chance they would treat her insights with respect.
She has found that many parents ask the same questions and suggested that the medical community is not adequately answering these questions. Often parents turn to the Internet for answers, where information quality is variable. Dixon Weber’s comments on the quality of information available online echoed earlier comments: the critical question is not what is presented but, “who said it?”
Dixon Weber described goals and concerns in developing educational materials for Fragile X syndrome similar to those described with regard to the Duchenne muscular dystrophy website (see Panel Discussion on Content).
- An effective website about a genetic condition must communicate new medical information and serve the emotional needs of the community. Patient stories can fulfill both these goals.
- To ensure information quality, advocacy groups should review user-submitted information before it is published on the site.
- Educational materials should take into account the way in which the audience is processing the information.
In developing new content and thinking about future developments, Dixon Weber endeavors to improve the user experience. She imagines creating a feedback system to measure how people are using the website and in what capacity.
Vision: The Next Level Shift in Information About Genetics
Ben Heywood described the risks and rewards of sharing both personal information and emerging medical data on a for-profit website. Heywood’s brother had amyotrophic lateral sclerosis (ALS), which was the impetus for starting Patients Like Me. Information about his brother’s experience is included on the website for other patients with ALS. Consumers come to Patients Like Me with common questions: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?” Patients Like Me is dedicated to providing patients with the best possible information about their condition, using the experiences of other patients with the same condition.
Patients Like Me relies on several key principles:
- Openness: Patients openly share health information, understanding that the benefit of learning about others’ experiences is balanced by the risk of potentially acting on this information without their doctors’ approval.
- Transparency: Patients Like Me is explicit about what they do with information collected on the website and their opinion of the safety of providing such information in this format.
- Community focus: Similar to previously described advocacy websites, Patients Like Me is not only about data, but about emotional support.
- “Auditable” sources: The website allows consumers to trace each specific point of information to its source, answering the “who said it?” question.
- Full access to all data: Patients Like Me shows historical data as well as current data to allow consumers to draw their own conclusions.
- Deliberate conclusions: This site slows down the dissemination of the most current data so that people can review it carefully before posting it.
Heywood imagines a new and ambitious use for Patients Like Me—to accelerate discovery by collecting data particular to specific disorders on the site. This patient-driven collection could allow for a longitudinal study of populations with specific conditions who are not being treated at the same hospital or even in the same country. Their only common factor would be their shared disorder. Treatments and outcomes could be tracked and compiled for research.
Moderated by Joseph D. McInerney
Who Is Reading Your Webpage?
- Reading Ability: Some websites about genetic conditions require a level of literacy that is much higher than is needed to use Facebook, for example. Successful websites consider user literacy. Not all parents of children with a genetic condition speak English as a first language or have a degree in science. Understanding your target audience can help focus your efforts.
- Computers: Some patients or caregivers may not have access to the Internet. At the National Fragile X Foundation, newly diagnosed patients can receive printed “special topic brochures” about specific issues. Additionally, new members can call for information.
Patients Like Me users share anecdotal evidence. Because of the self-selected nature of the contributors, this evidence may not give a global picture of the condition. Heywood notes, “It is possible that individuals who feel better don’t participate… We clearly think that we are going to get people who are not responsive to drugs, and are dealing with other issues every day.” Thus, the information on the site may be biased. Similarly, any system that filters and prioritizes information will have an inherent bias.
The Moment of Truth: Delivering Bad News
- Audience members emphasized the importance of training medical students to sit with healthcare providers delivering diagnoses to learn this critical skill.
- Bergner reiterated the psychological impact of receiving a diagnosis: “Some families are not ready for all the information and some are.” Dixon Weber elaborated, based on her experience talking to parents of children with Fragile X syndrome: “Talking to families with a 3-year-old child is very different from talking to families with a 2-week-old baby.” Delivering a diagnosis to a patient should include a conversation with the whole family.
Knowing What You Do Not Know
In contrast to the admonition that some patients may not be ready for a lot of information about their disorder at the time of diagnosis, some speakers asserted that healthcare providers have a responsibility to share large amounts of information. They should tell patients not only the basic facts about their disorder, but also anticipate the questions that patients should ask but are unable to imagine. “Road map” was a commonly used metaphor to describe the evolution of a patient’s understanding of his genetic disorder. The doctor or lay advocate knows the map based on their experiences with the progression of the disorder; the newly diagnosed patient, though, is unfamiliar with the map and needs to be coached about the types of questions he will need to ask and answer along the way.
The audience discussion can best be summed up in the words of one speaker who said that what families need is “information with information on how to get more.”
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Genetic Alliance, Washington (DC)
Genetic Alliance. Trust It or Trash It? Creating & Assessing Genetic Health Information. Washington (DC): Genetic Alliance; 2010. Panel Discussion: Content.