Jonas Bromberg, Psy.D. is Director of Health Communications and a Senior Research Scientist at Inflexxion, Inc. in Newton, MA. He is a consulting psychologist for the Boston Adult Congenital Heart Service at Children’s Hospital, Boston, and a staff psychologist at Human Relations Service in Wellesley, MA.

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Questions

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Evelyn Corsini, MSW:

As a health psychologist, what led to your interest in developing self-management websites for people living with a chronic medical condition?

Jonas I. Bromberg, Psy.D.: My training and early clinical work were with children and families. During my internship and post-doctoral years I worked primarily with families who were dealing with a chronic or life changing illness. My goal as a health psychologist has been to help individuals and families to adapt and adjust to the resulting changes in their lives. The work is especially rewarding because you are mostly dealing with mentally healthy people who are undergoing a huge amount of stress. By helping people learn to cope with illness, something for which there is no formal training, there is a real opportunity to make a big difference in the quality of people’s lives.

While I continue to work one-on-one with individuals and families in a clinic, the work I do at Inflexxion makes use of technology to extend my “clinical reach” to many more people who are adjusting and adapting to living with illness than I ever could see in an office-based practice.

The focus of my work is to teach people practical skills that help them become more confident and involved in managing their own care. This includes helping them develop a greater awareness of what they need to pay attention to, becoming better at finding and organizing information, and deciding where they can be optimally engaged in their health care. To a large degree this depends on building a sense of empowerment and self-efficacy.

There is clear evidence that getting people more involved in their healthcare can lead to better health outcomes, both physically and psychologically. While this is not what every patient wants, at a minimum, by increasing their understanding and learning the right language, they can become better health consumers.

EC: What draws patients to health websites and what keeps them there?

JB: People understand the value of good information and they now have an unprecedented level of access to all kinds of health information. For many patients, it helps them to feel more in control and more of a partner in their care.

Since there is so much available information, one of my goals is to help people to evaluate the quality and applicability of the information they are finding – to understand what kinds of information will help them, and what is wrong – and potentially harmful. I am always advising people to check that they are getting information from a credible source. For example, one rule of thumb is to stick with .gov and .edu sites, which tend to have the most reliable and current information. The Internet is full of lofty claims about perfect cures and remedies. I advise people that “if it sounds too good to be true” it probably is.

Some consumers even do research in medical journals. But even very knowledgeable consumers sometimes don’t understand things like why two research studies looking at the same thing can come up with conflicting answers. If people are digging into these sources, we need to try and help them understand them. Providing practical advice, like looking at whether the group under study is similar to them and has the same specific illness type, is useful. If this isn’t the case, the findings may not apply to them.

EC: Should healthcare providers warn patients to stay away from health information on the Internet? If no, how can they direct patients to appropriate Internet resources?

JB: Healthcare providers have a wide range of feelings about their patients going to the Internet for health information; some encourage it and others discourage it. I understand that they don’t have enough to time to explore what is “out there”, but they should be able to give patients some guidance so they can be more effective in their Internet use. No matter what, patients will seek out this information. There are many websites with solid information, and demonstrated efficacy in helping people to change their behavior, and better manage a specific health issue. For example, sites dealing with smoking cessation, diet, and exercise have helped many people to make important life changes.

People should also understand that seeking information on websites is not a substitute for talking with a knowledgeable healthcare provider. It can be a wonderful complement to direct care, but the direct part is critical. Health websites are a 24-7 resource, many of which have threaded discussions or social networking features which help people with illness feel less isolated.

EC: Describe your project to develop a migraine self-management website, and what you learned from the randomized controlled trial you conducted.

JB: When I received an NIH grant to develop the site for people with migraine, my goal was not solely to help them decrease their pain, but to improve the quality of their lives with pain. Eliminating pain is not a realistic goal for many people, but learning to have a better relationship with pain, and feeling more in control is achievable, even for people living with severe pain. The goal of painACTION.com is to help people become active and engaged self-managers of their pain.

Without going into a lot of the specific details about what we found, the results of the study showed that people who used painACTION during the study (the experimental group) reported significantly increased self-efficacy to manage their migraines, increased their use of relaxation strategies and social support, and decreased pain catastrophizing, depression, and stress. While we didn’t actually help people experience less pain, it looks like we made their lives with pain a lot better.

A paper describing the study in more detail was published in February 2012 in the journal Headache¹.

EC: What do you foresee as the future use of electronic devices connecting patients to healthcare providers and healthcare resources?

JB: I believe that the Internet will continue to play a larger and larger role in healthcare in the United States. We are already seeing a significant migration of information and health management tools from the Internet to things such as smart phones, and tablets. These mobile devices will play an increasingly significant role in the future. The real challenge for the healthcare systems is to know how to deliver this information and to integrate it with traditional models of service delivery. As more and more technology enabled information and tools are available to consumers, it will be incumbent upon us to ensure that access is available to all patients, regardless of their health literacy, and to assure that privacy and security are solidly protected.

1. Bromberg JI, Wood ME, Black RA, et al. A randomized trial of a web-based intervention to improve migraine self-management and coping. Headache. 2012; 52 (2): 244-261.