Continuing where I left off last week, with feedback and adjustments from members of the PCHIT Advisory Group:
Susannah Fox is an Associate Director at the Pew Internet & American Life Project, whose work has been very influential in describing people’s use of the Internet.
Susannah just published a report on patients with a Disability or Chronic Disease that we mentioned here previously.
Upcoming work that we will take note of includes work around PHR’s and EHR’s (Susannah is currently a contributor to e-patients.net), and a research agenda that will go beyond measuring simple Internet use. She describes this as “Attitude, Actions, Assets” and is looking at information ecosystems and people. Within these reviews, she will focus on 2 key populations: Latinos, and Teens. Within the teens group, she will be taking a look at gaming, and teens and writing.
It goes without saying that we follow Susannah’s work in a very dedicated fashion. I have been subscribing to the RSS Feeds offered by their site since I started using RSS. The forthcoming reports will offer an important view on PCHIT, especially now that I have returned from Boston and was able to observe care given in leading edge medical centers serving Latino patients, among others.
Key health care leaders are saying the time for PHRs are now. Based on the Boston visit, I am saying the time for multilingual and culturally relevant PHRs is now. We’ll be therefore eagerly awaiting these two new reports on the Pew web site.
Speaking of the Pew web site, Susannah is also managing its redesign, to make the information more modular and accessible, while incorporating the latest Web 2.0 feature. At least that’s our expectation. Given Pew’s current work in informing builders of Internet services for patients, we’ll look forward in how they inform the builders of the communication tools of those builders.
I wanted to follow up on Ted's note about Susannah's insightful comments in the context of our shadowing of Boston clinical practices last week. In the context of Susannah's exploration of "attitudes, assets and actions" in the information ecosystems, there are really two moving pieces that we need to explore to get patient-centered HIT applications implemented effectively. First, there is the challenge of clinicians who have different comfort levels, experience and incentives to use PCHIT applications. Second, there is the fact that the consumers/patients have radically different expectations of their interactions with electronic tools, depending on their generation and other characteristics.
With respect to the latter, while we often hear that a significant portion of people with chronic disease may not yet be comfortable with electronic communication, it's interesting to think about the other end of the age spectrum, where email may border on passe. I was involved in a discussion group yesterday as part of the Health Improvement Institute's "Quality of Health Information on the Internet" workshop, where the comment was made that many young people no longer have much need for email. For many of them, their preferred mode of electronic communication is text messaging. As we think about implementing PCHIT applications, we'll need to consider the full range of electronic communication messaging strategies, and I'm sure Pew's research will help inform that thinking.
With respect to the former, the information ecosystem for the clinicians also varies substantially–some of this is due to generation, or more specifically, when they began practicing medicine and in what environment. However, based on our time shadowing clinicians, an equal influence is the information infrastructure and incentives that support clinicians in trying to deliver communication to their patients that best meet their needs.
Thanks to both Ted & Josh for highlighting the Pew Internet Project's work in such a flattering spotlight!
Credit for the "attitudes, actions, and assets" insight goes to my colleague John Horrigan, who wrote our blockbuster report, "A Typology of Information and Communication Technology Users". I invite people to take our Internet Typology Test, which is a wonderful way to engage with the concepts and find out which of the 10 types you most closely resemble.
Our next report, due out in early December, will take a look at people's "attitudes and actions" regarding personal information and privacy online. I have discussed the findings with privacy experts AND with some cancer patients. I'm observing major gulfs between the general population (most of whom default to "ignorance is bliss"), privacy experts (who warn of the implications of personal exposure online), and patients (many of whom are quite willing to share their personal stories online in the hopes of getting advice and giving help to others). I hope we can discuss privacy implications of PCHIT in future posts!
My own experience in talking with people with (most*) serious conditions suggests that a lot of them are more than willing to share personal health information (PHI) online if they think it can help them or often just to help other people with similar conditions. One of the most vivid examples that I have seen is a site like dailystrength.org, where people share incredible detail about highly personal topics.
*I caveat that comment, because I also know that a significant portion of people with serious conditions–particularly those who suffer from "stigmatized" health issues–still keep their stories to themselves, even when they know that it reduces their own chances for improved health. Without question, I respect that need for privacy, and it clearly is an issue with which we all have to wrestle.
With thanks to Susannah Fox for introducing me to this initiative. I'm a patient, so bring that perspective to this thread. I agree with Josh that there is a strong motivation to share information that might otherwise be considered "private" online. I think there are several reasons for this:
1. for people dealing with serious health conditions, information is almost literally lifeblood. Andrea Meier at UNC is lead author on an article that appeared in JMIR last August, and looked at the ACOR communities. Information exchanges trumped emotional support exchanges. I'd say that for people in these communities, information becomes one of the most powerful types of emotional support.
2. there is also a strong desire to "give back." People want to make sense of what they are going through. If they can can use their experience to help others, they are highly motivated to do so.
3. the online medium may make it easier for some people to share information than they would be able to in person.
All of this said, I would never want to downplay privacy concerns, and believe any site that does encourage patients to share information must deploy the most robust privacy/security tools that are available.
Thanks for pointing out the Meier study about ACOR communities.
At our 2006 Ix Conference, we had an excellent presentation from an ovarian cancer survivor who has managed one of the ACOR listservs for many years. It was fascinating to hear: 1) how valuable the community is to its users and how much they share; 2) how the community has changed over the years in terms of the diversity of people using it; and 3) how effective the community was in self-policing (e.g., how quickly and clearly members of the community responded when erroneous information was posted).
The presentation really reinforced how important it is for us to learn directly from the experiences of consumers/patients.
A thank you also from me for bringing your perspective to the conversation. Your comments remind me of the incredible graciousness that patients have shown us when they are asked to share their experience in the exam room with a visiting physician. Some say yes, some say, "not this time," but in each case, I think people see the benefit of sharing because they want to "give back," as you indicated, to other patients.
I hope you will continue to participate as the story unfolds….