Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions

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Abstract

Background

Our health care system faces major threats as the number of people with multiple chronic conditions rises dramatically.

Objective

To study the use of Online Health Communities (OHCs) as a tool to facilitate high-quality and affordable health care for future generations.

Methods

OHCs are Internet-based platforms that unite either a group of patients, a group of professionals, or a mixture of both. Members interact using modern communication technologies such as blogs, chats, forums, and wikis. We illustrate the use of OHCs for ParkinsonNet, a professional network for Parkinson disease whose participants—both patients and professionals—use various types of OHCs to deliver patient-centered care.

Results

We discuss several potential applications in clinical practice. First, due to rapid advances in medical knowledge, many health professionals lack sufficient expertise to address the complex health care needs of chronic patients. OHCs can be used to share experiences, exchange knowledge, and increase disease-specific expertise. Second, current health care delivery is fragmented, as many patients acquire relationships with multiple professionals and institutions. OHCs can bridge geographical distances and enable interdisciplinary collaboration across institutions and traditional echelons. Third, chronic patients lack adequate tools to self-manage their disease. OHCs can be used to actively engage and empower patients in their health care process and to tailor care to their individual needs. Personal health communities of individual patients offer unique opportunities to store all medical information in one central place, while allowing transparent communication across all members of each patient’s health care team.

Conclusions

OHCs are a powerful tool to address some of the challenges chronic care faces today. OHCs help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice.

Related collections

Most cited references 59

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Self-management education: history, definition, outcomes, and mechanisms.

Kate Lorig, Halsted Holman (2003)

Self-management has become a popular term for behavioral interventions as well as for healthful behaviors. This is especially true for the management of chronic conditions. This article offers a short history of self-management. It presents three self-management tasks--medical management, role management, and emotional management--and six self-management skills--problem solving, decision making, resource utilization, the formation of a patient-provider partnership, action planning, and self-tailoring. In addition, the article presents evidence of the effectiveness of self-management interventions and posits a possible mechanism, self-efficacy, through which these interventions work. In conclusion the article discusses problems and solutions for integrating self-management education into the mainstream health care systems.

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Self-management interventions for chronic illness.

Stanton Newman, Liz Steed, Kathleen Mulligan (2004)

An increasing number of interventions have been developed for patients to better manage their chronic illnesses. They are characterised by substantial responsibility taken by patients, and are commonly referred to as self-management interventions. We examine the background, content, and efficacy of such interventions for type 2 diabetes, arthritis, and asthma. Although the content and intensity of the programmes were affected by the objectives of management of the illness, the interventions differed substantially even within the three illnesses. When comparing across conditions, it is important to recognise the different objectives of the interventions and the complexity of the issues that they are attempting to tackle. For both diabetes and asthma, the objectives are concerned with the underlying control of the condition with clear strategies to achieve the desired outcome. By contrast, strategies to deal with symptoms of pain and the consequences of disability in arthritis can be more complex. The interventions that were efficacious provide some guidance as to the components needed in future programmes to achieve the best results. But to ensure that these results endure over time remains an important issue for self-management interventions.

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Sharing Health Data for Better Outcomes on PatientsLikeMe

Paul Wicks, Michael Massagli, Jeana Frost … (2010)

Background PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?” Objective Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes. Methods Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson’s Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens). Results Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site “moderately” or “very helpful.” Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit. Conclusions We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms.

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Author and article information

Contributors

Bastiaan R Bloem:

Radboud University Nijmegen Medical CentreDonders Center for Brain, Cognition and BehaviourDepartment of Neurology (935)PO Box 9101Nijmegen, 6500 HBNetherlands31 24361520231 243541122b.bloem@neuro.umcn.nl

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications Inc. (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: June 2013

Publication date (Electronic): 25 June 2013

Volume: 15

Issue: 6

Electronic Location Identifier: e115

Affiliations

[1] ¹Radboud University Nijmegen Medical Centre Nijmegen Centre for Evidence Based Practice Department of Neurology (935) NijmegenNetherlands

[2] ²Radboud University Nijmegen Medical Centre Scientific Institute for Quality of Healthcare (IQ healthcare) NijmegenNetherlands

[3] ³Radboud University Nijmegen Medical Centre Department of Obstetrics and Gynaecology NijmegenNetherlands

[4] ⁴Radboud University Nijmegen Medical Centre Donders Center for Brain, Cognition and Behaviour Department of Neurology (935) NijmegenNetherlands

Author notes

Corresponding Author: Bastiaan R Bloem b.bloem@ 123456neuro.umcn.nl

Article

Publisher ID: v15i6e115

DOI: 10.2196/jmir.2476

PMC ID: 3713879

PubMed ID: 23803284

SO-VID: ad2ab0f0-8d60-44bb-be60-6d224aa39236

Copyright © ©Martijn van der Eijk, Marjan J Faber, Johanna WM Aarts, Jan AM Kremer, Marten Munneke, Bastiaan R Bloem. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 25.06.2013.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 11 December 2012

Date revision requested : 25 January 2013

Date revision received : 05 March 2013

Date accepted : 08 March 2013

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