Online Communities as Sources for Quantifying Observations of Daily Living

Shadeequa “Dee” Miller, Project HealthDesign Ph.D. in Engineering Student, University of Wisconsin-Madison

Online communities are increasingly being used for health information purposes and social support — especially among adults who have been diagnosed with chronic diseases. In fact, online communities have been found to have a positive effect on participants’ well-being and health care behaviors (Nimrod, 2009). However, there is little research on the use of web-based communication technologies such as e-mails, mailing lists, news groups, forums/message boards, chat groups, interactive sites and blogs as sources of information for the development of tools to capture observations of daily living (ODL) data.

Last semester I observed discussion boards for several online communities that connect people who are living with different chronic diseases. I found discussions that covered all aspects of chronic diseases, from treatments and symptoms to basic health matters and interpersonal relationships. I paid particular attention to discussion boards that address adherence to medication or treatment regimens. As I reviewed the discussion boards, I tried to identify ODLs, keeping in mind that participants perceive online communities to be safe, informative, useful and fun places to meet other people with similar health circumstances, to share experiences and to find information that helps them manage and/or cope with a chronic disease. The ODLs I identified were more detailed than I had expected. The additional contextual information users provided helped me to identify communication patterns in the expression and prioritization of ODLs. This led me to question whether ODLs are the same in online settings as in offline settings. If they are not the same, then why and how are they different?

Also, can online communities serve as resources for quantifying ODLs by allowing researchers to convert qualitative, patient-reported ODLs into numeric/quantitative ODLs? I believe the answer to be yes. A content analysis of discussion board messages that address treatment regimen and adherence could be collected and analyzed to identify ODLs, which may be one way to quantify ODLs. Another useful technique that may be used is Latent Semantic Analysis (LSA), also known as Latent Semantic Indexing (LSI), which would allow researchers to analyze discussion boards  to find the underlying meaning or concepts — ODLs in this case — of the boards.

My observations lead me to believe that some ODLs are the same in both online and offline settings. People may, however, provide more contextual information online. This trend may be related to the fact that online communities are places where users value trust and compassion. Patients find comfort in sharing health-related information, as well as emotions, online with peers who may have had similar experiences. These online peers can often provide the understanding and practical advice that clinicians are not always able to offer.

As I examined the online communities, I found that the manner in which ODLs were described changed as the intended audience changed (e.g., whether the intended audience used an avatar/was a regular participant in the forum) and as the community changed (e.g., comments varied between informal and formal communities). These are aspects that should be taken into consideration if online communities are to become resource through which to examine ODLs.

Do you think online communities could help researchers to quantify qualitative ODL data? Would this information be useful to clinicians? Is the integrity of online data compromised? What characteristics of online communities must be taken into consideration before using the information? Could device designers use these types of online information to help develop tools that capture ODLs?

Could 2011 Be a Big Year for Consumer Privacy?

Deven McGraw, Health Privacy Project Director, Center for Democracy & Technology

A number of developments at the end of 2010 suggest that 2011 could be an important year in the advancement of consumer personal information protections, which would include health information protections.

• The Department of Health and Human Services (HHS) Office of the National Coordinator (ONC) hosted a day-long roundtable, “Personal Health Records – Understanding the Evolving Landscape,” on December 3, 2010. The roundtable explored the current state and evolving nature of personal health records (PHRs), the value of PHRs to consumers, and privacy and security protections for PHRs.
  
  Three Project HealthDesign principal investigators submitted to the ONC comments demonstrating that a lack of comprehensive protections on PHR data, uncertain application of the law and failure of current law to keep up with technological innovation all hinder progress toward innovative care approaches that leverage innovations in information technology. This testimony will inform a congressionally mandated report on privacy and security protections for entities not covered by HIPAA (which includes many PHRs); this HHS PHR report is expected to be issued in 2011.

• Two days before the PHR Roundtable, the Federal Trade Commission (FTC) issued a comprehensive report on consumer privacy, “Protecting Consumer Privacy in an Era of Rapid Change.” The report was based in part on a series of public roundtables the FTC hosted in 2009 and 2010. In the report, the FTC notes the growing collection of consumer personal data (particularly on the Internet), consumers’ limited understanding of data collection practices and inability to make meaningful choices about them, the importance of privacy to consumers, the significant benefits that result from the increased flow of consumer data, and the blurring distinction online between personally identifiable information and information purported to be “anonymous” or de-identified.
  
  In response, they proposed a new framework for addressing the use of consumer data, both online and offline. This framework has three main components:
  1. Businesses should embrace a full complement of fair information practices and build consumer privacy protections into their everyday business practices (also known as “privacy by design”).
  2. Consumers should have more simplified, streamlined choices about how their data is accessed, used and disclosed.
  3. Businesses should increase the transparency of their data practices.

          The FTC is accepting comments on this report until February 18, 2011.

• Two weeks after the FTC released its consumer privacy report, the U.S. Department of Commerce (DoC) released its own report, “Commercial Data Privacy and Innovation in the Internet Economy: A Dynamic Policy Framework.” This report calls for the U.S. to improve its privacy protection framework and better align itself with global data protection initiatives. DoC also calls for a framework based on a full set of fair information practice principles. Those principles would then be used to create industry-specific codes of conduct that would be developed through negotiations with multiple stakeholders.
  
  The report recommends that any new commercial data privacy framework not conflict with existing laws that provide important protections, such as laws governing the health industry and the financial sector. The report also called for “nationally consistent” security breach notification laws.
  
  DoC is accepting comments on this report until January 28, 2011. Submit comments via e-mail.

At a minimum, these reports indicate a renewed federal focus on privacy protections for consumer data. The reports also suggest that privacy initiatives could garner congressional attention, and that the private sector could also become more engaged in developing strong, voluntary codes of conduct. All of this activity is occurring just as the HITECH meaningful use incentive program begins in earnest, ensuring that a focus on the use and protection of personal health data will remain front and center in 2011.

PCAST Report Comment: Looking Toward Truly Patient-Centered Health Data

Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director

As director of the RWJF-funded Project HealthDesign initiative, I commend the President’s Council of Advisors on Science and Technology (PCAST) for the effort and care evident throughout their December 2010 report, "Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward," and for the attention given to patients and their health information needs. I am encouraged to see that the technical standards and structures the council recommends will allow for broad and safe use of health information in the future. I also appreciate the report’s openness about the privacy and identity management concerns involved in this significant undertaking.

Yet even as I affirm the overall spirit of the report, I find myself searching for a more explicit focus on the patient. I was hoping for a report addressing health information technology, but this report focuses more on health care information technology.

Effective management and use of health data must contribute to the improvement of the health of individuals, families and societies. I echo the comments of Chris Gibbons of Johns Hopkins Urban Health Institute, who emphasizes that health data includes the life experience of the individual, which encompasses—but is not limited to—clinical encounters.

Through my work with Project HealthDesign, I have learned that clinical data tell only part of the patient’s story. We must also value any data that the patient values. Patient-defined, patient-generated data such as observations of daily living (ODLs) contribute to a full picture of the patient’s health and complement clinical care data.

ODLs serve as personal health sentinels, which give individuals cues about their health or alert them to take personal health action. Because they arise from the patient’s experience, not the clinician’s perception, ODLs may be the most truly patient-centered type of personal health data. I believe the standards and structures PCAST recommends will prove sufficiently robust to handle even these types of data.

From its beginning, Project HealthDesign has advocated a vision of health information technology (HIT) in which applications draw data from many sources and synthesize and present it in ways that guide action. As bodies such as the ONC and FDA deliberate the PCAST recommendations and use them to guide the criteria for demonstrating meaningful use of HIT, I exhort them to hold fast to the fundamental purpose of effective health data management, which is to improve health.

Related resources
• Read the full PCAST report [pdf]
• Read Project HealthDesign National Advisory Committee member Chris Gibbons' [bio] comment on the report
• Read Project HealthDesign National Advisory Committee member John Halamka's [bio] primer on PCAST-related technological terms

Patient-Clinician Communication Barriers and Bridges

Karmin Enge, R.N., Project HealthDesign M.S.N. Student, University of Wisconsin-Madison 

Last semester, I worked alongside a pediatric nurse practitioner in a pediatric intensive care unit. My goal has been to understand the information needs of families whose children have been involved in traumatic events. One common way to assess information needs in these types of situations is through interviews with patient families.

I have found interviewing to be challenging because some families appear reticent to speak to me about their experiences and their information needs. The fact that I am a student may affect their willingness to speak openly. Also, families are not always eager to speak candidly about their experiences in the hospital while their loved ones are there because they believe what they say may affect the care their family member receives.

Because I used qualitative research interviewing techniques to enhance the interview process, I expected a better response than was ultimately obtained. I feel there may be a barrier between the family and those seeking to understand their needs. It is important to gain an understanding of the family’s needs in order to create a meaningful method to meet their needs. There may be various reasons for this barrier that we don’t understand—these would be worth exploring.

When soliciting observations of daily living (ODLs) from patients, it is imperative to get feedback from patients and families directly since an ODL reflects the perspective of the person who reports it. Further information is required in order to show how students and researchers can build relationships with patient families such that any information obtained is genuine, useful and comprehensive.

I recently read an article that talked about patients and families sharing health-related information on Facebook that they are not sharing directly with their physicians. We need to better understand why they are willing to share information on Facebook, but not with clinicians.

Is it possible to utilize technology and expand upon existing functionality to develop communication tools that bridge the communication gap between families and clinicians?

“Man is least himself when he talks in his own person,” said Oscar Wilde. “Give him a mask, and he will tell you the truth." Can technology serve as a “mask” for patients?