Gibbons et al concluded that “available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.”
The abstract is below and can be accessed here and has a link to the full 500+-page report.
Objective: The objective of the report is to review the evidence on the impact of consumer health informatics (CHI) applications on health outcomes, to identify the knowledge gaps and to make recommendations for future research.
Data Sources: We searched MEDLINE®, EMBASE®, The Cochrane Library, Scopus™, and CINAHL® databases, references in eligible articles and the table of contents of selected journals; and query of experts.
Methods: Paired reviewers reviewed citations to identify randomized controlled trials (RCTs) of the impact of CHI applications, and all studies that addressed barriers to use of CHI applications. All studies were independently assessed for quality. All data was abstracted, graded, and reviewed by 2 different reviewers.
Results: One hundred forty-six eligible articles were identified including 121 RCTs. Studies were very heterogeous and of variable quality.
Four of five asthma care studies found significant positive impact of a CHI application on at least one healthcare process measure.
In terms of the impact of CHI on intermediate health outcomes, significant positive impact was demonstrated in at least one intermediate health outcome of; all three identified breast cancer studies, 89 percent of 32 diet, exercise, physical activity, not obesity studies, all 7 alcohol abuse studies, 58 percent of 19 smoking cessation studies, 40 percent of 12 obesity studies, all 7 diabetes studies, 88 percent of 8 mental health studies, 25 percent of 4 asthma/COPD studies, and one of two menopause/HRT utilization studies. Thirteen additional single studies were identified and each found evidence of significant impact of a CHI application on one or more intermediate outcomes.
Eight studies evaluated the effect of CHI on the doctor patient relationship. Five of these studies demonstrated significant positive impact of CHI on at least one aspect of the doctor patient relationship.
In terms of the impact of CHI on clinical outcomes, significant positive impact was demonstrated in at least one clinical outcome of; one of three breast cancer studies, four of five diet, exercise, or physical activity studies, all seven mental health studies, all three identified diabetes studies. No studies included in this review found any evidence of consumer harm attributable to a CHI application.
Evidence was insufficient to determine the economic impact of CHI applications.
Conclusions: Despite study heterogeneity, quality variability, and some data paucity, available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.
Improving health care: Journal of Participatory Medicine
will document methods that work
for patient/provider collaboration
Launch at Connected Health Symposium
features essays by visionaries in
health care, Internet, high tech, business, and sociology
Patient engagement and patient empowerment are popular topics, with hundreds of thousands of Google hits, but there’s precious little information on how to do them well. A new academic journal being launched this week, the Journal of Participatory Medicine, aims to change that.
Created by experienced pioneers of the “e-patient” movement, the Journal will be introduced this week at the Connected Health Symposium in Boston, hosted by the Partners HealthCare Center for Connected Health. The Journal is an official publication of the Society for Participatory Medicine, founded in 2009 by the patients and physicians who have worked together for several years at e-patients.net.
“Because health professionals can’t do it alone”
Participatory Medicine is a new approach that encourages and expects active patient involvement in all aspects of care. It builds on the work documented at the e-patients.net blog, whose slogan is “Because health professionals can’t do it alone.” The group’s landmark 2007 paper “E-Patients: How They Can Help Us Heal Healthcare” tells many stories of engaged, empowered e-patients who substantially improved their own outcome and the outcomes of others by supplementing or even going beyond what their physicians alone could do.
That paper and subsequent blog posts have further documented the stresses and information overload faced by physicians today, and flaws in today’s care delivery system and personal health data, including many anecdotes of patients who made a pivotal difference through active engagement. Now, the Journal of Participatory Medicine will move the field from anecdote to science, with articles on principles, methods and evidence-based outcomes.
Authoritative and accessible; peer-reviewed by patients and health care professionals
The Journal will be written and peer-reviewed by and for all stakeholders: patients, healthcare providers, caregivers, researchers, payers and policymakers. Physicians who have practiced in the participatory model report greater satisfaction when they work with patients who are actively engaged. Similarly, participatory patients say they feel empowered, heard, and more in control.
Free continuous updates online
The Journal will publish continuously and will be freely accessible to the public at http://jopm.org. Following the inaugural issue in early 2010, articles will be published as they are reviewed, accepted, and edited; there may also be single topic special issues. Email alerts will inform subscribers when new material has been posted. Anyone can sign up to receive these alerts at http://jopm.org/register.php
Available online now is a collection of invited essays that serve as the “launch pad” from which the journal will grow. In their opening editorial “Why the Journal?” the editors write,“We consider this introductory issue an invitation for you to join us as we create a robust journal that will serve a growing community of concerned individuals and professionals.”
Mission: To transform the culture of medicine
The Journal’s mission is to transform the culture of medicine by providing an evidence base for participatory health and medicine. It aims to advance both science and practice, focusing on six content areas: research articles, editorials, narratives, case reports, reviews, and updates on related research in other media. It will explore how participation affects outcomes, resources, and relationships in healthcare; which interventions increase participation; and the types of evidence that provide the most reliable answers.
Importance of a broad-based peer review process
The Journal uses a new, broad-based peer review process to significantly improve on traditional academic journals. While still managed by experienced journal editors, JoPM’s peer review process will be open to a far broader set of minds for scrutiny of methods and analysis. Improved accuracy and effectiveness are vital as the population ages and healthcare costs continue to rise.
In the first issue of JoPM, Richard Smith MD, editor of the prestigious British Medical Journal for 25 years, writes that “most of what appears in peer reviewed journals is scientifically weak.” This echoes the words of Marcia Angell MD in The New York Review of Books, who wrote in January “It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.” Considering the pivotal role that journals play in policy and treatment decisions, JoPM’s broad-based process aims to improve the reliability of the process and the resulting research.
Bringing thought leadership from many disciplines to healthcare
Because of the complexity and size of the healthcare challenge, the Journal of Participatory Medicine invites participation from all disciplines that can help.
Leadership of the Journal and the Society is shared between physicians and laypeople.
Co-Editors are Jessie Gruman, PhD, Founder and President of the Center for Advancing Health, and author of AfterSchock: What to Do When the Doctor Gives You—or Someone You Love—a Devastating Diagnosis; and Charles W. Smith, MD, Executive Associate Dean for Clinical Affairs and Professor of Family and Community Medicine, University of Arkansas for Medical Sciences, and Founder of eDocAmerica.
Deputy Editor is Alan Greene, MD, Founding President of the Society, Co-founder of DrGreene.com, Clinical Professor at Stanford University and Chief of Future Health at A.D.A.M., Inc.
Managing Editor is Sarah Greene, publishing and new media entrepreneur with three startups in science, health, and medicine acquired by Wiley, Elsevier, and Thomson Healthcare.
Founding Co-Chairs of the Society are Daniel Z. Sands MD, MPH of Cisco Systems and Beth Israel Deaconess Medical Center, and his patient “e‑Patient Dave” deBronkart, of ePatientDave.com and TimeTrade Appointment Systems.
Some of the articles featured in the first issue:
Investor and futurist Esther Dyson on “Why in the world ‘participatory medicine’?”
Longtime JAMA editor George Lundberg MD and former AARP board chair Joanne Disch PhD, RN: “Why healthcare professionals should be interested in PM”
Kate Lorig RN, Dr.P.H., Director of Stanford School of Medicine’s Patient Education Research Center: “Why people should be interested in PM,”
David Lansky, CEO of Pacific Business Group on Health and former Senior Director at the Markle Foundation, on “Why payers should be interested in PM”
Kurt Stange MD, PhD, Case Western Reserve University andeditor of the Annals of Family Medicine,and Gilles Frydman, founder of the ACOR.org network of cancer communities, on “Building an interdisciplinary field of inquiry and practice”
Richard Smith MD, former editor of BMJ,and Musa Mayer, famed breast cancer activist, on “The Value and Questions of Peer Review”
Launch is the closing event at Connected Health Symposium
The official launch of the journal will occur on Thursday, October 22 at 3:30 PM as part of a panel discussion about the “Changing Role of the Patient in Health Care and the Changing Rules of the Game for a New Publication.”
Moderated by Co-editor Jessie Gruman, the panel will include Gilles Frydman, Founder and President of ACOR (Association of Cancer Online Resources) and Editorial Board Member; Dan Hoch, MD, PhD, Dept. of Neurology, Mass. General Hospital, Co-founder of Braintalk, and Editorial Board Member; Deputy Editor Alan Greene, MD, and Co-editor Charles W. Smith, MD.
The Society chose to launch its journal at the Connected Health Symposium because of the long and sustained commitment Partners HealthCare and the Center for Connected Health have had to exploring innovative and effective ways to deliver quality healthcare outside of traditional medical settings.According to Gilles Frydman “Many of the editorial advisers and board advisers for the journal have been working with the Center for Connected Health for years. We are delighted to be partnering with them for this launch.”
About the Society for Participatory Medicine
The Society for Participatory Medicine was founded in 2009 to learn about and promote PM through writing, speaking, social networking, and other channels. It builds on the work of Tom Ferguson, MD, who envisioned the e-patient movement within months of the birth of the Web browser.
Society membership is open to anyone who shares the belief that PM should be the operative model for healthcare, that all involved parties share in a collective decision-making process, and that the patient is central to that process. Through PM we can teach patients to take responsibility for their own health and providers to effectively invite patients into this.
About the Center for Connected Health and the Connected Health Symposium
The Center for Connected Health, a division of Partners HealthCare in Boston, develops innovative and effective solutions for delivering quality patient care outside of the traditional medical setting.The Center engages in pioneering research in a wide range of connected health-related areas and works to advance the field through its convening and publishing activities. The term “connected health” reflects the range of opportunities for technology-enabled care programs and the potential for new strategies in healthcare delivery. The Connected Health Symposium asks how information technology – cell phones, computers, the Internet and other tools – can help people manage chronic conditions, maintain health and wellness, and age with independence.
Journal of Participatory Medicine:http://jopm.org or www.facebook.com/JourPM
The International Alliance of Patient Organizations (IAPO) released a “Policy Statement” last week to outline recommendations for information providers to meet consumer information needs. IAPO calls for greater patient involvement in policy development. IAPO explains the need for the statement:
“At present, the patients’ voice is not valued enough in policy-making and practice. Patient involvement is often merely tokenism; its influence on policy-making can be restricted by practical and financial structures, differing knowledge bases, cultural barriers and personal attitudes. Patient involvement should not be dependent on the good will of individuals but institutionalised in policy frameworks in order to become the rule, rather than the exception.”
IAPO’s policy statement includes four specific recommendations:
1. Stakeholders should extensively review existing healthcare mechanisms and structures for patient involvement, working with patients and patients’ representatives so that patient involvement is integrated into all decision-making processes, occurring from the start and on an ongoing basis.
2. Patient involvement initiatives should follow IAPO’s guidelines which incorporate the following:
* Robust and transparent mechanisms to ensure that patient views are acted upon, not just recorded
* Inclusion in initiation, design, implementation, communication and evaluation of initiatives
* Practical, psychological, financial and educational support for participants
* Varied methods to reach underrepresented groups and to gather a diversity of views
3. Patient involvement should occur whenever decisions are being discussed which will affect patients’ healthcare or lives including, but not restricted to, the following areas:
* Expert committees (e.g. ethics committees, reimbursement committees, governmental advisory committees, healthcare prioritisation and resource allocation committees)
* Regulatory processes
* Facilities design and development (e.g. hospital construction or refurbishment)
* Education and training programmes design (e.g. for health professionals)
* Research development (e.g. clinical trials design)
* Care and treatment guidelines design
4. All patients’ organizations should insist on involvement in all relevant health, economic, social and other policy-making where decisions will have an impact on patients’ lives.
The IxCenter, IDEO and the California HealthCare Foundation (CHCF) have just published a new report, “Innovating with Information Therapy (Ix): Prompting Transformational Change with Safety-Net Populations.” The report represents our findings and learnings from a collaborative project between the IxCenter and IDEO with funding and guidance from CHCF, as well as input from several experts and physicians who serve safety-net populations.
The project had two primary goals:
Identify and illustrate new information delivery mechanisms that prompt patients to improve their self-care behaviors.
Help safety-net organizations understand how prototyping methodologies can increase the efficiency of implementing new ideas.
One of the first things that we did was to learn directly from consumers themselves through ethnographic observation and structured consumer interviews. From there, we reconvened as a group to do storytelling and share insights we gained from consumers. The process then shifted to a group exercise of generating themes and how-might-we statements.
The second day began with intense brainstorming, followed rapid prototyping in which we develop what IDEO calls “10-dollar, 10-minute” prototypes. The idea was to actually develop something concrete and then we presented these prototypes to three people who live with chronic conditions. Before building out more fully, it’s critically important to get direct feedback from the target audience for your innovations.
Far more detail about what we learned and what we developed can be found in the report. We look forward to lots of feedback on our findings, and suggestions for where we might take this work next.
When Obama Administration Chief Technology Officer Aneesh Chopra started his keynote at today’s Health 2.0 Conference in San Francisco, he began by mentioning the work that I did when the two of us were at the Advisory Board Company (that’s him there pointing to me), where I first began experimenting with the concept of information prescriptions. That came out of a two-year project (1999-2001) where we developed in-depth consumer health content. Just as (or maybe more) importantly, we shadowed patients and clinicians in hospitals and clinics and conducted dozens of structured interviews with people with diabetes (and their families).
The first panel that followed Chopra, I saw some cool tools demo-ed, but I didn’t get a sense of whether they truly support patient-centered care and meet consumers’ real health needs. After the panel on “Clinical Groupware and the Next Generation of Clinician-Patient Interaction Tools,” I asked the question:
“How did you collect information from consumers in advance of developing your applications? Did you do focus groups, structured interviews, or direct ethnographic observation to understand what tasks consumers really want to accomplish? And, at what point in the development process, did you do that critical research?”
Only one of the panelists chose to respond to the question (I think it was Arien Malec, VP, Product Management, Relay Health, but I’m not sure). His answer was somewhat vague (compared to my rather specific question), with the exception of discussing how they incorporate user feedback they receive after the deployment of tools. Although I agree that user feedback (a core part of the Health 2.0 model) is invaluable for refining tools, it is a fundamentally different part of the research & development arsenal. And, more to the point, it was not an answer to my question.
So, when (following an excellent “The Patient Is In” session) I moderated the “Search & Content” session that featured six different Health 2.0 demos, I decided to keep asking the question until I got an answer that satisfies me. After all, the main reason that I could see for creating a panel with the diversity of demos covering all of search and content was because they basically address how we can help consumers get the right information at the right time to meet their decision-making and health management needs (basically colloquial for information therapy). I figured that I might get a better answer if I re-framed the question:
“What did you do in advance of building your technology to ensure that what you were building met specific consumer needs?”
I admit it was a loaded question in that I have a strong bias. Before investing millions of dollars in product development, I believe that — if the goal is to develop consumer-centric tools — every company should begin with some combination of these patient-centered research approaches:
Consumer surveys
Focus groups with patients and families/caregivers
Structured, extensive interviews with consumers
Shadowing of patients and clinicians
Direct, ethnographic observations of consumers in the settings where they “do” most of their health care (e.g., their homes, workplaces, schools, etc.)
If we want to meet Chopra’s call for robust innovation that transforms our economy and the health care delivery system, we first need to identify the health tasks that consumers want to accomplish. The best way to figure that out is to get answers directly from consumers before we write a single line of programming code.
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