Personal Health Records: More portable, but few seek access from health providers

“Americans have the right to access and take ownership of their health records, yet few take advantage of it despite the increasing complexity and cost of health care.
Physicians, for their part, are wary of relying on records provided by patients.”
Article
Gary Gosselin, Michigan Business Review, 3 September 2008

Are you getting through?

“If you think patient literacy isn’t a problem in your practice, think again. A 2004 Institute of Medicine report found that one out of two adults has problems understanding patient education literature, forms they’re asked to complete, medication instructions, and information the doctor tells them about their health conditions and treatments.”
Article
Neil Chesanow, Medical Economics, 7 July 2008

Personal health records: addressing consumer needs for access

“Abstract: In this paper, we present a discussion of personal health records (PHRs). The development of PHRs in the USA has occurred as a result of the Institute of Medicine’s direction to improve healthcare quality and make it more patient-centred, as well as demands from patients for more control of their health data. The PHR addresses timeliness, patient safety and equity. The PHR is also integral to the US National Health Information Network (NHIN) being designed to give all Americans access to electronic health records by 2014. Despite increasing access to PHRs via employers, insurance companies, healthcare providers and independent entities, adoption and successful implementation of the PHR as well as other types of electronic records (Electronic Medical Record (EMR) and Electronic Health Record (EHR)) is unclear. The specific interaction and distinction between these records is also unclear. This article differentiates the PHR from the other records, introduces the notion of ownership of medical information and presents a basic research model regarding PHR adoption and diffusion.”
Abstract
Melinda Whetstone, Ebrahim Randeree, International Journal of Healthcare Technology and Management 2008 - Vol. 9, No.3 pp. 258 - 274

Patients’ attitudes to the summary care record and HealthSpace: qualitative study

“Objective To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care.
Design 103 semistructured individual interviews and seven focus groups.
Setting Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation.
Participants Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme.
Methods Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances.
Results Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person’s level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for “vulnerable groups.” Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness.
Conclusion Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The “implied consent” model for creating and accessing a person’s SCR should be revisited, perhaps in favour of “consent to view” at the point of access.”
Article
Trisha Greenhalgh, Gary W Wood, Tanja Bratan, Katja Stramer, Susan Hinder, BMJ, doi:10.1136/bmj.a114 (published 29 May 2008)

e-Health is fine, doctors say, but show us the money

“The American College of Physicians has released a position paper that endorses e-health programs, but it also calls for doctors to receive higher fees for their use of health information technology.
“E-Health activities have great potential to transform health care in the United States,” Dr. Joel Levine, chairman of the ACP board of regents, said at a Washington press conference today. At the same time, he said increased payments are needed to compensate doctors for the cost of acquiring and maintaining the technology.”
Article
Nancy Ferris, Government Health IT, 16 May 2008

Consent Forms That Patients Can Understand

“Informed consent may be the biggest misnomer in medicine: Studies show that most patients don’t read the forms they sign before undergoing surgery or medical treatment. More than half of those who do read the forms don’t understand them, and only a quarter of forms include all of the data patients need to make an informed decision.”
Article
Laura Landro, The Wall Street Journal, 6 February 2008

Health Literacy Practices in Primary Care Settings: Examples from the Field

“Low health literacy is widespread among U.S. patients, yet limited research has been done to assess the effects of health literacy practices designed to combat the problem, particularly among safety-net providers in primary care settings. This report presents findings from a 2005 study in which the Association of Clinicians for the Underserved first did an online survey of health care facilities across the country and then followed it up with visits to five selected sites for staff and patient interviews. The study identified five health literacy practices that staff considered especially valuable for their group’s patients and potentially applicable to other clinics: a team effort, beginning at the front desk; use of standardized communication tools; use of plain language, face-to-face communication, pictorials, and educational materials; clinicians partner with patients to achieve goals; and organizational commitment to create an environment where health literacy is not assumed.”
Report
Sharon E. Barrett, Jennifer Sheen Puryear, and Kathie Westpheling, The Commonwealth Fund, January 2008

What Do Evaluation Instruments Tell Us About the Quality of Complementary Medicine Information on the Internet?

“Background: Developers of health information websites aimed at consumers need methods to assess whether their website is of “high quality.” Due to the nature of complementary medicine, website information is diverse and may be of poor quality. Various methods have been used to assess the quality of websites, the two main approaches being (1) to compare the content against some gold standard, and (2) to rate various aspects of the site using an assessment tool.
Objective: We aimed to review available evaluation instruments to assess their performance when used by a researcher to evaluate websites containing information on complementary medicine and breast cancer. In particular, we wanted to see if instruments used the same criteria, agreed on the ranking of websites, were easy to use by a researcher, and if use of a single tool was sufficient to assess website quality.
Conclusions: Comparing the content of websites against a gold standard is time consuming and only feasible for very specific advice. Evaluation instruments offer gateway providers a method to assess websites. The checklist approach has face validity when results are compared to the actual content of “good” and “bad” websites. Although instruments differed in the range of items assessed, there was fair agreement between most available instruments. Some were easier to use than others, but these were not necessarily the instruments most widely used to date. Combining some of the better features of instruments to provide fewer, easy-to-use methods would be beneficial to gateway providers.”
Article
Breckons M, Jones R, Morris J, Richardson J, J Med Internet Res 2008;10(1):e3, published 22.01.08

Impact of Web Searching and Social Feedback on Consumer Decision Making: A Prospective Online Experiment

“Background: The World Wide Web has increasingly become an important source of information in health care consumer decision making. However, little is known about whether searching online resources actually improves consumers’ understanding of health issues.
Objectives: The aim was to study whether searching on the World Wide Web improves consumers’ accuracy in answering health questions and whether consumers’ understanding of health issues is subject to further change under social feedback.
Conclusions: Searching across quality health information sources on the Web can improve consumers’ accuracy in answering health questions. However, a consumer’s confidence in an answer is not a good indicator of the answer being correct. Consumers who are not confident in their answers after searching are more likely to be influenced to change their views when provided with feedback from other consumers.”
Article
Lau AYS, Coiera EW, J Med Internet Res 2008;10(1):e2, published 22.01.08

Readability and cultural sensitivity of web-based patient decision aids for cancer screening and treatment: A systematic review

“Abstract Decision aids (DA) can inform cancer screening. We conducted a systematic review of web-based, cancer DA to evaluate their appropriateness for use with low literacy and diverse culture groups. Eighty-one Internet DA were found searching five databases (Pubmed-Medline; Web of Science/SSCI; Cancerlit; CINAHL; and Google) and the Cochrane decision aid inventory. Twenty-three met key inclusion criteria of (1) informing cancer screening or treatment decisions, (2) being patient or consumer oriented, and (3) conforming to the Cochrane definition of DA. DA were evaluated using the International Patient Decision Aid Standards checklist, the Cultural Sensitivity Assessment Tool (CSAT), the Cultural Sensitivity Assessment Checklist (CSAC), and the SMOG readability formula. DA had a high readability with 74% (n = 17) written at the grade 10 - 13, 22% (n = 5) at the grade 9, and 4% (n = 1) at the grade 8 level. Visual aids were used in 35% (n = 8 ) to present probability information. Written information was complemented with video or audio components in 35% (n = 8 ). Most (91%, n = 21) were developed for generic audiences, while 9% (n = 2) specified a cultural group. Although DA enabled a step-by-step movement through the website, none allowed key word searches and only 65% permitted document printing. Most DA included difficult texts and were not focused for specific cultural groups.”
Abstract
M. D. Thomson; L. Hoffman-Goetz, Informatics for Health and Social Care, Volume 32, Issue 4 December 2007, pages 263 - 286, DOI: 10.1080/14639230701780408

Access to information and support for health: some potential issues and solutions for an ageing population

“Computer illiteracy is diminishing as a new generation of retirees become the younger old and display more up-to-date knowledge and skills. However, there are questions about whether this group will be able to continue to update their skills as they get older, and whether it is appropriate to develop technology solutions specifically for this age group or to concentrate on accessible designs for the whole population. We propose that older people may be empowered through involvement in the design and provision of accessible information and technology solutions and through training opportunities in information seeking skills. Access, involvement and training need to be provided in everyday locations, and training needs to be closely related to people’s physical, cognitive and information needs and those of the particular communities where they live. These issues are explored using evidence from a number of research projects conducted by the authors.”
Abstract
Sue Capel, Sue Childs, Linda Banwell, and Susan Heaford, Health Informatics Journal, Vol. 13, No. 4, 243-253 (2007)

Accessible Health Information Technology (IT) for Populations with Limited Literacy: A Guide for Developers and Purchasers of Health IT

“This guide and checklist are intended for developers and purchasers of health information (IT) that is designed to be accessed and used by consumers. As most health IT developers have little knowledge of populations with limited literacy and of the technical standards and aspects of accessible health IT design, this guide and checklist provide a structure, strategies, and other resources for the development of these technologies. Similarly, purchasers of health IT (e.g., heath plans, pharmaceutical companies, foundations, and other non-profit organizations) that desire to make technologies available to limited-literacy adults, can use this guide and checklist to evaluate a health IT product. For those purchasers who contract out the development of their product, this guide can be used to direct and validate the developer’s work.”
Report
AHRQ Publication No. 08-0010-EF, October 2007

AHRQ Guide Addresses Health IT Needs of Patients With Limited Literacy

“Here’s something to think about: You’ve developed a new interactive practice Web site for your patients only to discover that the site is a frustrating maze to patients with low e-health literacy levels.”
Article
AAFP News Now, 14 November 2007

Report 

Health Literacy Training Reduced ER And Clinic Visits And Boosted Parents’ Confidence

“New research proves that a “dose” of hands-on health care training can transform parents’ abilities to care for common childhood ailments at home — and save Medicaid millions of dollars annually.”
Article
Medical News Today, 8 November 2007

Accessible Health Information Technology (IT) for Populations with Limited Literacy

A Guide for Developers and Purchasers of Health IT.

This guide and checklist are intended for developers and purchasers of health information (IT) that is designed to be accessed and used by consumers. As most health IT developers have little knowledge of populations with limited literacy and of the technical standards and aspects of accessible health IT design, this guide and checklist provide a structure, strategies, and other resources for the development of these technologies. Similarly, purchasers of health IT (e.g., heath plans, pharmaceutical companies, foundations, and other non-profit organizations) that desire to make technologies available to limited-literacy adults, can use this guide and checklist to evaluate a health IT product. For those purchasers who contract out the development of their product, this guide can be used to direct and validate the developer’s work.”
Report
June Eichner and Prashila Dullabh, NORC at the University of Chicago, for National Resource Center for Health IT Agency for Healthcare Research and Quality, October 2007