Patient Involvement

Health literacy: is it time to shift our focus from patient to provider?

by Theo Raynor

Commissioned editorial published in the British Medical Journal 22nd March 2012 (online)

Increasing people’s ability to understand and engage in their healthcare is an international priority. Research,... more Increasing people’s ability to understand and engage in their healthcare is an international priority. Research, particularly from the United States, has shown that people who lack such ability have poorer health outcomes and increased mortality.1 In the linked study (doi:10.1136/bmj.e1602), Bostock and colleagues show an adverse effect on mortality in patients in the United Kingdom too. The findings of this study are worrying, but not surprising. The study also suggests that a third of older people in the UK have difficulty reading and understanding basic health information. Considered alongside data from the US and
Australia, these findings suggest that between a third and half
of people in developed countries have difficulty understanding
and engaging in their healthcare and that this has important
consequences for health. In light of such findings it seems remarkable that the matter is not given higher priority.

The Missing Voice of the Critically Ill: A Medical Sociologist's First‐person Account

by David Rier

Sociology of Health and Illness 22:68-93; 2000


{Reprinted in Readings in Medical Sociology [2nd Ed.], William C. Cockerham (ed.), Englewood Cliffs, NJ: Prentice-Hall, 2000}.

{Reprinted in Case Study Research, Vol. II, Matthew David (ed.), London: Sage, 2005}.

Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients,... more Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients, themselves. Moreover, most of the literature on the patient's experience involves chronic illness. Based on the author's experience as an intensive care unit (ICU) patient, this paper demonstrates that certain concerns of the post-Parsonian literature, such as full disclosure of information to patients and patients' negotiation and collaboration with physicians, are of minimal relevance for critically ill patients. This paper also discusses the notebook the author used in the ICU to communicate while on a respirator, thus unintentionally leaving a concurrent record of his experience, in a form of "inadvertent ethnography.” This allowed him to reconstruct experiences rarely accessible to sociologists. Such notebooks can help us construct accounts of the ICU patient's experience, and move us towards a sociology of the critically ill patient. Potential topics for this new research area are suggested.

KEY WORDS: critical illness; intensive care unit (ICU); Parsons; empowerment; disclosure

Research Proposal - Experiences of NF1

by Carly Jim

LINKING SOCIAL CARE, HOUSING AND HEALTH DATA: SOCIAL CARE CLIENTS’ AND PATIENTS’ VIEWS

by Mhairi Aitken

A report from a study conducted on behalf of the Scottish Government to explore the views of social care clients, patients and carers, on linking social care, housing support and health data for statistical research purposes

This study aimed to explore the views of social care clients, patients and carers, on linking social care, housing... more This study aimed to explore the views of social care clients, patients and carers, on linking social care, housing support and health data for statistical research purposes and their perceptions of potential impacts on privacy.

The objectives of the project were to:
1. Assess social care clients and patients’ awareness and understanding of the data collected on their use of services;
2.  Explore social care clients and patients’ perceptions of data linking;
3. Identify concerns around data linking and sharing of data between organisations;
4. Explore how any privacy concerns could be addressed;
5. Explore what information would reassure social care clients and patients about how their data will be used;
6.  Examine understanding and perceived appropriateness of explanations provided to social care clients/patients as to how their personal information may be used and;
7.  Explore the perceived impact of linking social care, housing and health data on social care clients and patients’ and the public more widely.

Designing a Web-based Telehealth System for Elderly People: An Interview Study in New Zealand

by Jaspaljeet Singh Dhillon

The 24th International Symposium on Computer-Based Medical Systems (CBMS 2011), University of the West of England, Bristol, 27-30 June 2011

Co-authored with Czarina Ramos, Burkhard C. W¨unsche and Christof Lutteroth

Designing healthcare systems for the elderly is a challenging endeavour. Telehealth systems are gaining popularity... more Designing healthcare systems for the elderly is a challenging endeavour. Telehealth systems are gaining popularity among elderly users, but such applications are mostly doctor-centric and are predominantly used for managing and/or treating diseases instead of preventing them. They do little to motivate patients to change their lifestyle and proactively manage their health. To address these shortcomings, we propose a web-based telehealth system, which uses Web 2.0 technologies in order to add social support and user defined content. In this study, we determine the functional and interface requirements of the system by conducting open individual semi-structured interviews with eight elderly people of age range 60 to 87. A paper prototype and three interfaces of existing Web 2.0 health applications were used to determine the optimum user interface design of the system. A qualitative content analysis was used to evaluate the responses. Overall, the respondents were positive about the idea of using the web to manage their healthcare from home and made several suggestions such as including applications to manage their diet, physiotherapy exercises to improve their health conditions and simple network games to reduce loneliness.

Towards A Ubiquitous Patient-Centric Telehealth System

by Jaspaljeet Singh Dhillon

The 9th New Zealand Computer Science Research Student Conference (NZCSRSC 2011), Massey University, Palmerston North, 18-21 April 2011

Co-authored with Burkhard C. Wünsche and Christof Lutteroth

The elderly population is growing fast in most developed countries. The aging population, high medical expenses, the... more The elderly population is growing fast in most developed countries. The aging population, high medical expenses, the shrinking number of health workers and elderly carers demand for more healthcare innovation that empower health consumers to manage their health independently from home. Telehealth is thought to be a solution for effective elderly healthcare. However, the usage of telehealth is limited by a design often centered around the requirements of the clinical user, healthcare provider, and the equipment vendor. Many existing systems suffer from high initial costs, cannot be extended by third parties, require extra costs to add new functionalities, and are designed to create a continuing revenue source for the vendor. Furthermore the systems are usually designed to manage diseases rather than prevent them, and do not address the social and psychological needs of the patient. Based on these shortcomings, we propose a novel web-based telehealth framework called Healthcare4Life, which is ubiquitous, extendable by third parties, contains social aspects, and puts the user in control. In contrast to previous work, we propose an open structure with a middlewarelike functionality. The framework emphasises the need for social
support and psychological factors influencing usage and compliance. In this paper, we describe telehealth usability requirements and analysis of existing consumer health informatics applications which leads to the design of a novel ubiquitous telehealth system.

Leveraging Web 2.0 and Consumer Devices for Improving Elderlies' Health

by Jaspaljeet Singh Dhillon

The Australasian Workshop on Health Informatics and Knowledge Management
(HIKM 2011), Perth, Australia, 12 May 2011

Co-authored with Christof Lutteroth and Burkhard C. Wünsche

With a growing elderly population in many developed countries, technologies for supporting elderly healthcare are... more With a growing elderly population in many developed countries, technologies for supporting elderly healthcare are becoming more and more important. As technologies such as the Web and consumer level devices evolve, this opens up new opportunities for telehealthcare. In this paper, we discuss how the paradigm known as the Web 2.0 can be leveraged to develop solutions that are more patient-centric and empower the patients, especially the elderly, to manage their own health from home. We critically analyse popular Web 2.0 health applications and propose a framework for overcoming their shortcomings. Furthermore, we describe how consumer level devices such as off-the-shelf computers and motion sensing input devices can be used to make telehealthcare more accessible and affordable. Devices such as iPhones and the Wiimote controllers can enable patients to perform rehabilitation and prevention activities such as exercises at home. We argue that by combining the potentials of Web 2.0 and new consumer devices, a more holistic approach to telehealthcare can be achieved.

Framework for Healthcare4Life: a ubiquitous patient-centric telehealth system

by Jaspaljeet Singh Dhillon

The 11th Annual ACM SIGCHI NZ Conference on Computer-Human Interaction (CHINZ 2010), Massey University, Auckland, New Zealand, 8 July 2010

Co-authored with Burkhard C. Wünsche and Christof Lutteroth

Health care systems in many developed countries are rapidly approaching a crisis point. The reasons are an aging... more Health care systems in many developed countries are rapidly approaching a crisis point. The reasons are an aging population, a shrinking number of workers, health care costs increasing faster than the economy, expensive new treatment options, poor public finances, and the reducing pool of health care professionals. The problem is compounded by the fact that elderly are more often affected by chronic diseases which require ongoing, often expensive, treatment. Telehealth and telecare applications are rapidly gaining in popularity because of their promise to use existing health care resources more effectively and hence to lower costs. However, usage is limited by a design often centered around the requirements of the clinical user, healthcare provider, and the equipment vendor. Many existing systems suffer from high initial costs, cannot be extended by third parties, require extra costs to add new functionalities, and are designed to create a continuing revenue source for the vendor. Furthermore the systems are usually designed to manage diseases rather than prevent them, and do not address the social and psychological needs of the patient. In this paper we critically analyse existing consumer health informatics systems and propose a framework for overcoming the identified shortcomings. The proposed system is ubiquitous, extendable by third parties, contains social aspects, and puts the user in control. Evidence from related research suggests that the design will increase motivation and participation, encourage family and social support, and improve the recording of health parameters by reducing user resistance.

Taxonomy of usability requirements for home telehealth systems

by Jaspaljeet Singh Dhillon

The 11th Annual ACM SIGCHI NZ Conference on Computer-Human Interaction (CHINZ 2010), Massey University, Auckland, New Zealand, 8 July 2010

Co-authored with Christof Lutteroth and Burkhard C. W¨unsche

Over the past decade increasing healthcare and elderly care costs and demographic changes are rapidly making... more Over the past decade increasing healthcare and elderly care costs and demographic changes are rapidly making traditional healthcare concepts unaffordable for many developed countries. Telecare and telehealth applications have become increasingly popular because of their promise to reduce costs and staffing requirements while maintaining or even improving care. Most of the existing applications are centred around the clinical users. Patient factors are considered, but usually only incorporated into the user interface design rather than the system and its application. The patient population, and especially the large proportion of elderly patients, has unique needs, capabilities and limitations that must be considered throughout the design process of such applications. In this paper we present a taxonomy of usability requirements and design concepts for home telehealth systems which enable a more patient centric design. We systematically explore the usability problems of past and current telehealth applications. Problems faced by users of home telehealth systems are identified and solutions delineated. The paper aims to build a good understanding of the technology needs of the elderly population. It represent a solid foundation for constructing novel and more general telehealth solutions in order to make the technology more effective and more widely available.

Research Report Series: A Taxonomy of Usability Requirements for Home Telehealth Systems (TR Number: UoA-SE-2010-1)

by Jaspaljeet Singh Dhillon

Technical Report (complete version of the conference paper)
Co-authored with Christof Lutteroth, Burkhard C. W¨unsche

Over the past decade increasing healthcare and elderly care costs and demographic changes are rapidly making... more Over the past decade increasing healthcare and elderly care costs and demographic changes are rapidly making traditional healthcare concepts unaffordable for many developed countries. Telecare and telehealth applications have become increasingly popular because of their promise to reduce costs and staffing requirements while maintaining or even improving care. So far applications are mostly restricted to monitoring tasks in a home environment. Adoption and use is further constrained by the high initial costs, the lack of extendability, and a system design which is centred around the clinical users. Patient factors are considered, but usually only incorporated into the user interface design rather than the system and its application. In this paper we present a taxonomy of usability requirements and design concepts for home telehealth systems which enable a more patient centric design. We systematically explore the usability problems of past and current telehealth. Problems faced by users of home telehealth systems are identified and solutions delineated. The paper aims to build a good understanding of the technology needs of the elderly population. It represent a solid foundation for constructing novel and more general telehealth solutions in order to make the technology more effective and more widely available.

Rees, Rebecca and Oliver, Sandy (2007) An example from sexual health promotion. In: Collection of examples of service user and carer participation in systematic reviews. Social Care Institute for Excellence, London, pp. 15-34.

by Rebecca Rees

Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach

by Rebecca Rees

Oliver,S. Clarke-Jones,L. Rees,R. Milne,R. Buchanan,P. Gabbay,J. Gyte,G. Oakley,A. and Stein,K (2004) 'Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach', Health Technology Assessment 8 (15), 1-148

by Rebecca Rees

A multidimensional conceptual framework for analysing public involvement in health services research

by Rebecca Rees

Living with Ankylosing Spondylitis: The Patient's Perspective

by Kate Hamilton-West

Rapid Progress or Lengthy Process? Electronic Personal Health Records in Mental Health

by Felicity Callard

Ennis L, Rose D, Callard F, Denis M, Wykes T (2011) Rapid Progress or Lengthy Process? Electronic Personal Health Records in Mental Health. BMC Psychiatry 11: 117.

A major objective of many healthcare providers is to increase patients' participation in their own care. The... more A major objective of many healthcare providers is to increase patients' participation in their own care. The introduction of electronic personal health records (ePHRs) may help to achieve this. An ePHR is an electronic database of an individual's health information, accessible to and maintained by the patient. ePHRs are very much in vogue, with an increasing number of studies reporting their potential utility as well as cost. However, the vast majority of these studies focus on general healthcare. Little attempt has been made to document the specific problems which might occur throughout the implementation of ePHRs in mental health. This review identifies such concerns through an electronic search of the literature. Several potential difficulties are highlighted and addressed, including access to information technology, identifying relevant populations and the handling of sensitive information. Special attention is paid to the concept of 'empowerment' and what this means in relation to ePHRs.

Buyer beware? Does the information provided with herbal products available over the counter enable safe use?

by Theo Raynor

BMC Medicine 2011, 9:94doi:10.1186/1741-7015-9-94

Authors: David K Raynor, Rebecca Dickinson, Peter Knapp, Andrew F Long, Donald Nicolson

Background
Herbal products obtained over the counter are commonly used in Europe, North America and Australia.... more Background
Herbal products obtained over the counter are commonly used in Europe, North America and Australia. Although there is concern about a lack of information provided to consumers to allow the safe use of these products, there has been no published research to confirm these fears. In this study, we evaluated written information provided with commonly used herbal products in the UK in advance of a European Union Directive issued in April 2011 that tightened regulations for some herbal products, including requirements to provide safety information.

Methods
Five commonly used herbal products were purchased from pharmacies, health food shops and supermarkets: St John's wort, Asian ginseng, echinacea, garlic and ginkgo. Written information provided with the products (on the package or on a leaflet contained in the package) was evaluated for inclusion of each of the key safety messages included in the monographs of the US National Center for Complementary and Alternative Medicine. Specifically, we looked for information on precautions (such as Asian ginseng not being suitable for people with diabetes), interactions with conventional medicines (such as St John's wort with the contraceptive pill and warfarin) and side effects (such as ginkgo and allergic reactions).

Results
Our analysis showed that, overall, 51 (75%) of 68 products contained none of the key safety messages. This included 4 of 12 St John's wort products, 12 of 12 ginkgo products, 6 of 7 Asian ginseng products, 20 of 21 garlic products and 9 of 13 echinacea products. The two products purchased that are registered under the new European Union regulations (for St John's wort) contained at least 85% of the safety messages.

Conclusions
Most of the herbal medicine products studied did not provide key safety information which consumers need for their safe use. The new European Union legislation should ensure that St John's wort and echinacea products will include the previously missing information in due course. The legislation does not apply to existing stock. Depending on therapeutic claims made by manufacturers, garlic, ginkgo and Asian ginseng products may not be covered by the legislation and can continue to be bought without the safety information. Also, consumers will still be able to buy products over the internet from locations outside European Union jurisdiction. Potential purchasers need to know, in both the short term and the long term, how to purchase herbal products which provide the information they need for the safe use of these products.

Are patients willing participants in the new wave of community-based medical education in regional and rural Australia?

by Liz Farmer

J Nicky Hudson, Kathryn M Weston, Elizabeth E Farmer, Rowena G Ivers and Russell W Pearson Med J Aust. 2010 Feb 1;192(3):150-3

Abstract
Objective: Community-based medical education is growing to meet the increased demand for quality... more Abstract
Objective: Community-based medical education is growing to meet the increased demand for quality clinical education in expanded settings, and its sustainability relies on patient participation. This study investigated patients’ views on being used as an educational resource for teaching medical students.

Design: Questionnaire-based survey.

Setting and participants: Patients attending six rural and 11 regional general practices in New South Wales over 18 teaching sessions in November 2008, who consented to student involvement in their consultation.

Main outcome measures: Patient perceptions, expectations and acceptance of medical student involvement in consultations, assessed by surveys before and after their consultations.

Results: 118 of 122 patients consented to medical student involvement; of these, 117 (99%) completed a survey before the consultation, and 100 (85%) after the consultation. Patients were overwhelmingly positive about their doctor and practice being involved in student teaching and felt they themselves played an important role. Pre-consultation, patients expressed reluctance to allow students to conduct some or all aspects of the consultation independently. However, after the consultation, they reported they would have accepted higher levels of involvement than actually occurred.

Conclusions: Patients in regional and rural settings were willing partners in developing skills of junior medical students, who had greater involvement in patient consultations than previously reported for urban students. Our study extends the findings from urban general practice that patients are underutilised partners in community-based medical training. The support of patients from regional and rural settings could facilitate the expansion of primary care-based medical education in these areas of workforce need.

Preferences for involvement in treatment decision making of patients with cancer: a review of the literature

by Lisa Kidd

A review of literature about involving people affected by cancer in research, policy and planning, and practice

by Lisa Kidd