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Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data.

Frost JH, Massagli MP - J. Med. Internet Res. (2008)

Bottom Line: Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns.This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management.We recommend that future designs make each patient's health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

View Article: PubMed Central - HTML - PubMed

Affiliation: PatientsLikeMe Inc, 222 Third Street, Suite 0234, Cambridge, MA 02142, USA. jfrost@patientslikeme.com

ABSTRACT

Background: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient-physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders-the patients-is not well documented or understood.

Objective: PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues.

Methods: Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other's profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges.

Results: Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns.

Conclusions: Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient's health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

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Charts comprising the personal profile
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figure2: Charts comprising the personal profile

Mentions: On PatientsLikeMe, each patient enters a combination of structured and unstructured data, which are compiled and presented as a profile of his or her health history and shared within the site. Profiles contain a summary representation of the patient’s current status: a diagram that maps functional impairment to areas of the body (Figure 1), a personal picture, an autobiographical statement, a diagnosis history, and a series of charts. The “nugget” summary diagram displays the current function score as a color code mapped onto affected areas of the body as well as the number of years with the disease, an iconic representation of the equipment currently used, and stars indicating level of participation on the site (see Figure 1). As in similar projects [20-22], PatientsLikeMe created a graphical display of health information as an alternative to static lists and tables in order to make the data more accessible. The primary chart on the ALS site is a line graph of the individual’s functional level over time, superimposed onto a backdrop of population-level data (Figure 2). Function is assessed through an adaptation of the clinically validated, self-administered form of the revised ALS functional rating scale (ALSFRS-R) [23].


Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data.

Frost JH, Massagli MP - J. Med. Internet Res. (2008)

Charts comprising the personal profile
© Copyright Policy
Related In: Results  -  Collection

Show All Figures
getmorefigures.php?uid=PMC2553248&req=5

figure2: Charts comprising the personal profile
Mentions: On PatientsLikeMe, each patient enters a combination of structured and unstructured data, which are compiled and presented as a profile of his or her health history and shared within the site. Profiles contain a summary representation of the patient’s current status: a diagram that maps functional impairment to areas of the body (Figure 1), a personal picture, an autobiographical statement, a diagnosis history, and a series of charts. The “nugget” summary diagram displays the current function score as a color code mapped onto affected areas of the body as well as the number of years with the disease, an iconic representation of the equipment currently used, and stars indicating level of participation on the site (see Figure 1). As in similar projects [20-22], PatientsLikeMe created a graphical display of health information as an alternative to static lists and tables in order to make the data more accessible. The primary chart on the ALS site is a line graph of the individual’s functional level over time, superimposed onto a backdrop of population-level data (Figure 2). Function is assessed through an adaptation of the clinically validated, self-administered form of the revised ALS functional rating scale (ALSFRS-R) [23].

Bottom Line: Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns.This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management.We recommend that future designs make each patient's health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

View Article: PubMed Central - HTML - PubMed

Affiliation: PatientsLikeMe Inc, 222 Third Street, Suite 0234, Cambridge, MA 02142, USA. jfrost@patientslikeme.com

ABSTRACT

Background: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their health care providers. While this type of record does seem to have beneficial effects for the patient-physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders-the patients-is not well documented or understood.

Objective: PatientsLikeMe is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues.

Methods: Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each other's profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges.

Results: Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and to foster and solidify relationships based on shared concerns.

Conclusions: Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping them engage in dialogues that may inform disease self-management. We recommend that future designs make each patient's health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations.

Show MeSH
Related in: MedlinePlus