IT-Empowered Consumers and Advocates for Chronic Disease Management

• Abstract
• Introduction
• Materials and Methods
• Results
• Internet Search Support
• Agenda Support
• Lifestyle Support
• Online Communities
• Consumer Role in the Electronic Health Record
• Integrating the Consumer with the Health Care System
• Discussion
• References

Abstract
The growing prevalence of chronic illness and the rising ubiquity of technology motivates examination of the potential role of information technology (IT) for greater empowerment of consumers and their advocates in health care. Areas where the consumer can contribute to their own health outcome in chronic disease management include both adherence to a care plan and the broader issue of becoming an active partner in care planning. IT can support the consumer’s role in various ways, such as enabling life-long learning and providing reminders. This paper identifies and reviews several areas of technology for consumer empowerment: Internet search support, agenda support, lifestyle support, online communities and the consumer role in electronic health record (EHR) systems. The potential of IT to empower health care consumers and their advocates in chronic disease management appears promising but is in need of further research evidence. Moreover, there is a need for an overarching architecture for the integration of consumer-empowerment promotion services with each other and with “mainstream” health care systems. Regional and national strategies need to embrace the full range of consumer IT options.

Introduction
Two primary factors motivate this examination of the potential role of information technology (IT) for greater empowerment of consumers and their advocates in health care:

1. The growth in the prevalence of chronic illness, especially where patients have considerable influence on the risk and/or subsequent treatment of their condition (with adult-onset diabetes mellitus being perhaps the best example); and
   
2. The rising ubiquity of technology, where we can soon expect the majority of patients (especially the newly diagnosed) to have cell phones, many to have Internet access, and nearly all community-based doctors to have a computerised patient management system on their desk with an Internet connection open on a continuous basis.

This paper focuses on the cognitively based contribution that consumers and their advocates (caregivers without extensive clinical training, including family and volunteers) can make to chronic disease management. Considerable attention has been paid to the possibilities of ubiquitous “high tech” monitoring of patients in the home, eg, various continuously worn monitoring devices, such as accelerometers to detect falls.^[1] The present topic, however, examines what consumers and advocates can contribute to the promotion of their own health when actively using their minds. This paper’s broad view of the “management” aspect of chronic disease management includes prevention of a disease or complication as well as success in the implementation of ongoing therapeutic plans (and of course there is no clear dividing line between these). The primary scenarios in this paper concern situations where a health care consumer is already in an ongoing therapeutic relationship with one or more health care provider – hence the terms “consumer” and “patient” will be used interchangeably.

Areas where consumers can contribute to their own health outcome in chronic disease management include both adherence to a care plan and the broader issue of becoming an active partner in care planning. This transition from compliance to partnership can be identified with empowerment. Activities of an empowered patient should include medication adherence, contribution to monitoring, lifestyle improvements, schedule adherence, lifelong learning as relevant to their individual health condition (both of a practical and theoretical nature) and participation in consultations with health care professionals (especially general practitioners [GPs]). The role of the advocate comes most strongly into play where the consumer wishes or needs someone else to take on significant components of these activities; however, the availability of one or more advocates to create a social, rather than a solo, journey in chronic disease management is always desirable.

This paper overviews several key technologies which could empower consumers in their chronic disease management and concludes with a discussion of the barriers and opportunities in this domain, emphasising the need to collect more evidence and to integrate consumer-empowerment capabilities into New Zealand’s ongoing regional and national health IT plans.

Materials and Methods
IT can support patient-led activities for chronic disease management, although its ultimate effectiveness in so doing is still unclear. The next section provides a non-systematic review of several key technologies for consumer empowerment. In being “non-systematic”, the author freely admits that the choice of technologies reviewed is representative of his personal experiences and biases. In defence of this approach, the aim is to expose the reader to a range of technology options for consumer empowerment that may not otherwise have been explicitly considered. No claim is made that the list is exhaustive or that the techniques have proven to be effective, and there is no doubt that there may be an iatrogenic downside to some or all of the approaches reviewed.

Results
Internet Search Support
Consumer use of the Internet has attracted considerable attention, and no small amount of concern in the medical community. The upside of having informed consumers is that they understand their treatment options, are less baffled by relevant terminology and can recognise side-effects. The main issue in this area is helping consumers find information that is of good “quality” – to find material that is accurate and, first, does no harm. Interestingly, the evidence is unclear regarding the quality of health information on the Internet^[2] and in terms of use and impact of Internet-based information, where in fact use may be less than is popularly believed. ^[3]

Interventions that have been designed to solve the issue of information quality include the creation of major consumer portals, such as the Australian HealthInsite portal, where all external links are professionally verified and have the approval of the Australian Medical Association – thus creating a “safe surf”. An even safer environment can be developed by creating customised online material, such as an interactive tutorial. These solutions suffer problems related to cost and maintenance – finding the resources for keeping the links accurate, ensuring they stay relevant and accurate and simply reviewing (or creating) enough material to satisfy the user base. A more subtle problem can arise where consumers feel that such resources have not given them the opportunity to search. In many cases, consumers must feel that they have seen all the options before reaching acceptance of a recommended course of action or treatment plan.

An interesting technological compromise has been demonstrated in BCKOnline (the Breast Cancer Knowledge Online) portal. BCKOnline contains metadata (systematised descriptions) of online resources formulated by breast cancer sufferers themselves.^[4] In particular, resource selection is carried out by “women with first hand experience of breast cancer and extensive knowledge of the medical, supportive and psychosocial information needs of the breast cancer community” who utilise a set of criteria developed through extensive user consultation and are specific to each resource category.^[5] The portal system facilitates the matching of consumer queries to resources in terms of desired length and style of material (with such options as a preference for first-hand accounts), and in terms of stage of disease (early, recurrent, or advanced).

The “holy grail” in this area is fully automatic creation of metadata, however, this is no easier than the creation of a general Artificial Intelligence – an algorithm that can compute the topic and worth of a page of text as reliably as a knowledgeable human is not a realistic goal. That said, there are certain markers of online content that have significant positive association with resource quality. The possibility of increasing effectiveness of consumer health searches by using automatically created quality and relevance metadata is promising. For example, Civan and Pratt^[6] illustrate use of multi-dimensional quality-score displays to support users in selecting resources with a strong reputation. Another possibility is to process consumer queries and conduct “query expansion”: inserting relevant professional terminology into the query before it is sent to one or more search engines. An attempt to do this, using the Unified Medical Language System (UMLS), has shown some query performance gains,^[7] even though this is well outside the intended use of the UMLS.

Agenda Support
A subtle variation of the consumer Internet search – wherein the usual implicit goal is to find relevant health information that enhances consumers’ understanding of their condition and its treatment per se – is where consumers are supported in identifying important issues of concern or interest to discuss with health care professionals. As such, these issues would then form part of the agenda for a subsequent visit to their doctor (or other professional) or, possibly, email-based correspondence. With technology for agenda support the aim is to articulate and make explicit the consumer’s issues and questions. The value of this lies in the assumption that the best “answer” is not necessarily to be found simply by the consumer reading online, but rather that the learning (and its adoption) will be enhanced through discussion of the issue with one or more healthcare professionals. Moreover, the “answer” may not be a simple matter of information directly related to the question – the ideal outcome may involve improved doctor–patient communication, increased trust and understanding, and potential for better consumer adherence to a plan they feel they have satisfactorily negotiated. The need for agenda support is underlined by research indicating that patients often have an unvoiced agenda (eg, see ^[8]) that can derive from many social and situational factors including, simply, a lack of time for patients to thoroughly formulate questions during the brief span of a consult.

The Violet Technology (VT) consumer portal for diabetes^[9] provides an illustration of an agenda support tool. This portal provides consumers with three sources of questions or issues that they may wish to add to their agenda:

1. Anything the consumer would like to supply in response to the prompt “What part of diabetes is the most difficult or unsatisfying for you?” It is expected that the answer may change over time.
2. Issues related to unsatisfactory values from a consumer’s online medical records or responses to online health questions (eg, if they responded Strongly Agree to “I am afraid of my diabetes”).
3. Any topics browsed online for which a consumer has expressed an interest (via an interest assessment box accessible through the portal’s browsing frame).

Furthermore, a consumer can devise any other “free form” question to add to an agenda. In the VT paradigm, a set of selected questions/issues is then simply printed to a hardcopy agenda, with space for notes provided, to be taken to the doctor–patient consult. One can imagine a future health care system where these questions/issues are managed as an explicit part of the patient’s electronic health record (EHR).

Lifestyle Support
A great deal of the burden of disease can be attributed to the more-or-less explicit choices we all make and the resulting health problems. Such choices are made, notably, about tobacco use, food and (lack of) exercise (bringing on obesity and diabetes), excessive alcohol intake, problem gambling, and non-compliance with recommended therapies. Unhealthy behaviours of course owe much to addiction, habit and beliefs – perhaps more so than to simple lack of knowledge. However, there is much to be said for the potential of an electronic "life coach” to remind, encourage, inform, suggest and be available when our will is weakening.

The STOp smoking with Mobile Phones (STOMP) trial illustrates a personalised consumer IT intervention that has shown positive experimental outcomes for the general cell-phone-using population^[10] and that was equally effective among Maori and non-Maori participants.^[11] In STOMP, cell phones were used to provide personalised text-based messages for advice, support and, notably, distraction for people trying to stop smoking. Among the important lessons to be learned from STOMP is the reminder that the end-user “terminal” for a computer-based consumer health service need not be a PC with a Web browser or some large purpose-built kiosk. In today’s world of graphical user interfaces it is easy to forget the power of a comparatively narrow-band communications channel such as the 160-character Short Messaging Service (SMS) format. Such systems need to be based on a detailed model of the change process, and require the ability to monitor a consumer’s progress and to select messages for them that are appropriate to the individual at a given moment. Another powerful modality is to use automated interactive voice technology, as has been done with the Boston-based Telephone-Linked Care (TLC) service, which promotes healthy behaviour through interactive voice that consumers often find quite emotive.^[12] The TLC provides a sort of oral newsletter that can be tailored to the individual. Because of the use of voice, it can engender stronger emotional responses, such as guilt and love, in the consumers receiving its messages.

Beyond direct communication with individual consumers who are attempting to make a healthy lifestyle change, a broader spectrum of possibilities emerges if we consider action addressing consumers’ social networks. This could take the form of messages to a family member or supportive friend of the consumer in question or (assuming appropriate permissions had been supplied) a message to the consumer’s doctor. The members of the consumer’s social network could be prompted to provide support or encouragement and, perhaps, garner their own health benefits (eg, taking a mutually beneficial walk with a family member due to a prompt delivered to one family member on behalf of the other). The role of the lifestyle support system could even go on to be a “matchmaker” to individual consumers that were previously unaware of one another (eg, suggesting a previously unknown exercise or shopping partner from the same neighbourhood who sees the same GP).

Online Communities
Online communities which focus on health and illness are prolific and have emerged as an important health care resource. People gather in large numbers in these Internet communities to seek and share information, validate and affirm their illness experience and connect with others. These groups provide emotional support, guidance and health information for nearly all illnesses, support self-education and self-responsibility, encourage patients’ initiative and assertiveness, and provide members with an opportunity to help others. They are eminently practical for consumers with severe disability who may find face-to-face social interaction physically difficult to achieve on a regular basis. The asynchronous nature of the interaction can be useful for more able consumers who have to deal with work and/or family duties and find their best time for social interaction and self-expression to occur at very late or early hours.

In a technical sense an online community may simply be a manifestation of a “real world” social network and be as tenuous as a network of email threads with no central technical foundation. In increasing technical formalism, however, there can be an email list (possibly with a moderator that controls membership or vets content) or a Web server that controls and maintains a persistent discussion forum (with or without formal membership controls for access or authorship). Another option is a collaboratively authored Web document – a “wiki” (see http://en.wikipedia.org/wiki/ Wiki).

Despite the high usage levels, and strong physician concern regarding the accuracy and safety of peer-to-peer health information exchanges among patients, there is no robust evidence on consumer-led peer-to-peer communities.^[13] Investigations undertaken by the author with others^[14,15] have explored the use of expert-moderated email discussion groups for sufferers of chronic illness and have found the discussions to be very rich. These discussions create a wealth of research data for understanding the personal and social phenomena of coping with chronic illness^[14] and show potential for automated analysis of language usage to detect crisis states in participants.^[15] An interesting reflection regarding online communities is that more computer-literate participants (who may or may not be ill themselves) can potentially do a lot of the Internet searching on behalf of others, and can also electronically come in contact with health care professionals.^[16] As such, there is the potential for robust online communities to alleviate some of the need for Internet Search Support (as reported above), or to exploit advanced search tools to a greater degree than one might expect based on the abilities of the “average” consumer.

Consumer Role in the Electronic Health Record
A technology that has attracted increasing interest is that of Personal Health Records (PHR).^[17,18] The PHR differs from the mainstream EHR in the sense that the PHR is owned by the patient/consumer, and the consumer potentially has a larger role in collecting data for it, control of access to the data, and may contribute directly to the record. As Internet use becomes increasingly widespread, the attention of researchers seems to have moved away from solutions based on a personally held storage device, such as a smartcard, and towards solutions where the data resides on the Internet (which is not to say that smartcard solutions are not in active use in some countries and under discussion in several others). Advantages of Internet-housed data include:^[17,18]

• A supplement to systems integration – patients can provide linkages where health care systems fail to interoperate.
• Patients as a source of correction to obvious errors in their record (and cases where the patient incorrectly believes an item to be in error may be a basis for a doctor–patient discussion – see next point).
• Use of the record as a platform for productive doctor–consumer discussions – both in terms of email mediated through a PHR system and of patients identifying topics for face-to-face discussion via out-of-consultation review of their PHRs.
• The role of consumers in providing direct data entry to their records, particularly in terms of routine monitoring, including linkage to home-based automated monitoring devices.

Moreover, the existence of an Internet-based PHR can make it easier for an advocate, with the consumer’s consent, to become involved in an informed manner (eg, with access to the doctor’s list of current medications and allergies).

Tang et al^[17] note that there is growing evidence of consumer satisfaction with PHRs, but that the potential benefits outlined above remain unproven. However, Tang et al find that the consensus in the literature is that most of the benefits of PHRs are maximised where there is an explicit integration of the mainstream health care system EHR and the PHR. Relying on the consumer to always remember to get EHR extracts to add to their PHR is likely to be suboptimal. Moreover, smooth integration of the PHR and GP patient management systems holds particular promise for promoting doctor–patient partnerships that engender consumer adherence to a negotiated care plan. The evolving patient role in the EHR should extend into the patient’s view of the care plan, including patient participation in scheduling of services.

Integrating the Consumer with the Health Care System
As outlined above, there are diverse classes of IT that can better support consumers as intelligent agents in their own care. In New Zealand, we have come to accept that hospitals need a suite of information systems applications, and that virtually every GP should have a computer on their desk with a specialised patient management system. Consumers also deserve an information system to support his/her role that is as good as (or preferably better than) what GPs have today. Since consumers are not health care providers, the consumer system will be different from current health care applications. The consumers’ information system must be designed for users that have, at least initially, vastly less understanding of relevant clinical concepts. The consumer system should place strong emphasis on interaction with GPs and other providers and on support for the role of a social support network for patients featuring nominated consumer advocates.

Health care strategy in developed countries (eg, the US, UK, Australia and Canada) now explicitly recognises consumers as the central entity in health care. New Zealand is no exception; the Health Information Strategy for New Zealand^[19] is clearly consumer-focused and recognises the emergence of more empowered and, specifically, Internet-enabled consumers. However, the vision of what consumers will do with health care technology extends no farther than “[consumers] will also be more engaged, by electronically interacting with providers, where it makes sense to do so”.^{[19 p.20]} This statement highlights the key concepts of engagement and consumer–provider communication but is significantly lacking in any elaboration of the diverse functionality that is possible – in particular, the structured management of consumer questions, automated lifestyle support services and the entire realm of online communities (sections titled "Agenda Support", "Lifestyle Support" and Online Communities", respectively) appear not to have been considered. Further, the potential role of advocates, although incorporated in the Strategy’s definition of “consumer”, lacks explicit consideration in terms of its unique possibilities and requirements.

There is a need for an overarching architecture for the integration of consumer-empowerment promotion services with each other and with the “mainstream” health care system. To achieve this, New Zealand’s regional and national strategies need to embrace the full range of consumer IT options. Consumer IT will be much more powerful and better-utilised if a range of resources can be accessed through a common and integrated portal, both to improve usability for the consumer and to exploit the common data requirements of the various consumer functions. Moreover, consumer IT will benefit from explicit connections to health care provider systems for efficiency and the accuracy of data movement between consumers and providers (in both directions), and to indicate provider endorsement of the consumer role.

Discussion
The potential of IT to empower health care consumers and their advocates in chronic disease management appears promising but requires further evidence (ie, randomised controlled trials, where they exist, are limited in terms of outcome measures and scope in general). Consumer Internet searching for health information is the most discussed and most thoroughly researched consumer empowerment phenomenon, but it is also the least “systematic” in the sense that the activity, as presently conducted, has only tenuous links to the health care system. Beyond support for Internet searching and online communities, which have been largely consumer-created phenomena, there has been a striking lack of sustained or wide-scale development of capability in IT for consumer empowerment. New Zealand today has a very promising infrastructure for both the trial and sustained deployment of consumer empowerment promotion services, building on the existing IT presence in the health care system and the community (notably, the widespread uptake of patient management software in general practice). Integration with general practice systems, with bi-directional information flow, should be a particular goal for IT support of consumer activities in chronic disease management.

Support for consumer and advocate empowerment should not be omitted from regional plans and national e-health architectures. There is need for change in the healthcare system, both to improve performance from current levels and to sustain the system under pressures of an ageing population with increasing levels of chronic illness. Plans that merely call for automation of existing operational pathways will fail to exploit the true potential of IT.

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