Notes from the academic paper: Challenges to using an electronic personal health record by a low-income elderly population.

Although the EHR and PHR have different end?user groups, they contain similar information. Ideally, they should be inter-operable. In the past few years, adoption of EHRs has been encouraged, whereas PHRs have not received the same level of attention. However, as Tang and Lansky and Ball et al discussed, the EHR alone may lack the ability to sufficiently motivate and engage patients to take a more active role in managing their own health, a condition found critical for improving care quality and efficiency [16]. Therefore, PHRs have been recognized as a means of patient engagement. An EHR -coupled PHR, which is often referred as a patient?accessible EHR or tethered PHR , has been increasingly offered in the United States to patients as an institution?specific (limited to a certain organization) Internet portal by some large health care organizations (eg, Kaiser Permanente, Veterans Health Administration, Group Health Cooperative, CareGroup Health Care System, and Palo Alto Medical Foundation).

Due to the high incidence and prevalence of chronic conditions that generally require frequent monitoring and interventions, elderly people would benefit more because the PHR system could enable more coordinated and cost?effective communication and health care delivery.

The digital divide is defined as the gap that exists between individuals, groups, or communities in terms of the availability of ICT and the ability to use these technologies effectively.


Notes from academic paper: Conditions potentially sensitive to a personal health record (PHR) intervention, a systematic review

Ten health conditions were found in the included studies. Seven of these ten health conditions had at least one study reporting benefit from the use of a PHR: asthma, diabetes, fertility, glaucoma, HIV, hyperlipidemia, and hypertension. Diabetes was the most studied condition with eleven of twelve studies showing benefit. Three conditions had studies that meth the criteria but did not show benefit of the PHR: cancer, idiopathic thrombocytopenic purpura (ITP), and multiple sclerosis.

70% of studies (16/23) reported benefits associated with PHR use.

However, there is no evidence that any study of the above provided evidence of better medication adherence or at least persistence.

Self-Manage Care – Using the PHR to make day-to- day decisions about care management, such as medication dosing, food choice.

This is the only grounds that medication intake was improved.

These conditions include: diabetes, hypertension, asthma, HIV, fertility management, glaucoma, and hyperlipidemia. Benefits were seen in care quality, access, and/or productivity. These conditions share several common characteristics: Each of these conditions is chronic. They have a significant benefit from self-management through behavioral changes. Many have an aspect of monitoring, either from the clinician or the patient (self-monitoring). Self-management is present in all. The seven conditions were conditions where the self-management behaviors could be suitably tracked in a PHR and were tightly linked to the feedback of monitoring/self-monitoring of indicators (Figure 3). For ex- ample, self-monitoring blood pressure in hypertension or glucose levels in diabetes allowed for more specific and direct feedback to patients using a PHR.


Notes from the academic paper: A literature review for large-scale health information system project planning, implementation and evaluation

Health information systems (HIS) have potential to increase efficiency and save considerable amounts of health expenditure.

Current rates of adoption of health information technology are low and health information systems are under-utilized.

Kaplan notes that “there has been a long history of difficulties in achieving clinical use of some kinds of clinical informatics applications. ” Within this context, it is imperative that HIS implementation is evaluated and features of successful implementation identified.

Eysenbach summarizes the goals of technology in healthcare, suggesting that eHealth should be: (1) Efficient, thereby decreasing costs, (2) Enhance quality of care, (3) Evidence based, proven by rigorous scientific evaluation, (4) Empowering for consumers and patients, (5) Encouraging a partnership relationship between patient and health professional, (6) Educate physicians and consumers, (7) Enabling information exchange and communication in a standardized way between health care establishments, (8) Extending the scope of health care beyond its geographical and conceptual boundaries, (9) Ethical – e-health involves new forms of patient-physician interaction and poses new challenges and threats to ethical issues, and (10) Equitable. Haux identified seven general tasks of HIS over time. These are [59]: (1) to move paper-based processing and storage to computer-based; (2) to move from local to national and global HIS; (3) to include patients as HIS users; (4) to use HIS data for healthcare planning, clinical and epidemiological research (aside from patient care and administration); (5) to change the focus from technical aspects of HIS to management change and strategic information management; (6) to place more emphasis on image and molecular data; and, (7) to acknowledge the steady increase of new types of technologies, perhaps as yet un-imagined.

The reasons cited in favor of the implementation of HIS are primarily around efficiency, cost, quality and safety.

No matter how success or failure is defined (if it is) the evidence of effectiveness is generally weak and inconsistent. Information systems of all types notoriously fall short of their expectations and fail to deliver benefits (see for example, Gauld and Goldfinch. Shpilberg et al.  reported that only 15% of business executives surveyed believed that their company’s IT capability was highly effective, ran reliably, and delivered projects with promised functionality, timing, and cost. Systematic reviews of healthcare settings consistently find that there is little evidence that care provided by technological innovations is any better than traditional methods. Whitten’s systematic review of HIS cost-effectiveness found that there is no conclusive evidence that telemedicine is a cost effective way of delivering healthcare. Mistry reviewed the cost-effectiveness literature ten years later and concluded that the results of their review were consistent with previous findings: there is no further conclusive evidence that technological interventions are cost effective compared to conventional healthcare. However, it is also the case that these reviews noted methodological shortcomings in studies evaluating cost effectiveness. These were particularly around the amount of methodological detail provided and the methods used to measure cost effectiveness.

Effective evaluation allows us to understand how and under what conditions HIS work, and determine the safety and effectiveness of the system. Evaluation can provide guidance to the implementation process and mitigate unplanned negative outcomes. Ammenwerth defines evaluation as “the act of measuring or exploring attributes of a health information system (in planning, development, implementation, or operation), the result of which informs a decision to be made concerning that system in a specific context.” This should include the inevitable organisational change which accompanies the implementation of HIS. Early approaches to evaluation focused on the “measurement of changes in processes and of the consequences of these changes” while more recently attention has been paid to the complex, iterative and multidimensional implementation process. Effective evaluation accompanies the whole life cycle of HIS, evaluating technology against a comprehensive set of measures throughout all stages. Measuring the success of HIS is not straightforward and the challenges in the organisation and setting of HIS make both implementation and evaluation of the HIS difficult. Evaluation processes are also often flawed.


Notes from the academic paper: the Complexity of Adherence Issue: a Review of Its Scope and Determinants

This is a very important paper!

Although the term compliance has been in use for the longest period of time, nowadays it is considered that it is not entirely adequate and that changes in the relation between patients and healthcare professionals must be taken into consideration. Patients’ status is no longer submissive and passive and their role in accomplishing therapeutic objectives does not only imply compliance with medical instructions but active cooperation and agreement with a doctor and a pharmacist. Due to these reasons the term adherence has become more desirable in practice since the 90’s of the 20th century.

Differences between compliance and adherence are thus not only in the semantic sense but of essential nature. While in compliance the focus is on the healthcare provider who has a dominant status in relation to the patient, the concept of adherence is oriented to the patient and cooperation. In relation to this, the flow of information is one-way and the objective is to achieve obedience of the patient, while adherence implies a two-way information transfer and engagement of both subjects.


Notes from academic paper: “Compliance” to “concordance”: A critical view

this is a well written literature review.

A key question across domains is, “how are patients/health agents/consumers persuaded to acquire certain drugs and take them as directed?”

The introduction of “concordance” to the literature on medication compliance and adherence—“adherence” is the most neutral, non-ideological, term for patient behavior, in use at least since the mid 1990s.

The question that concordance theorists have really asked is not, “how do we treat patients’ health beliefs more respectfully?” but rather, “how do we persuade patients to follow the advice of their doctors?”

We can frame a rhetorical question across domains: how are people persuaded to take drugs?


Several authors have written even-handedly about concordance and make clear that cooperation between physicians and patients is likely to lead to better, and more appropriate, use of medications. Elwyn, Edwards, and Britten write, “Concordance describes the process whereby the patient and doctor reach an agreement on how a drug will be used, if at all. In this process doctors identify and understand patients’ views and explain the importance of treatment, while patients gain an understanding of the consequences of keeping (or not keeping) to treatment.” Ferner writes, “Usually…the patient, who has most to gain by success and the most to lose from harm, should decide whether to have treatment, and the prescriber should provide information on the risks and benefits to help make the decision.”

It is easy to agree that cooperative, better-informed, and realistically-prepared patients are more likely to adhere to recommended treatments than those who are resistant, ill- informed, and unprepared.

So, “concordance,” with its egalitarian rhetoric, not only portrays physicians and patients as equals but also portrays all patients as equals—while, in truth and in practice, patients are not all equally well-equipped for consensual decision-making, and, certainly, not all physicians believe that they are. When one exits the concordance literature to enter other literature about patients, what becomes clear is that the respect for patients that is invoked as the key resource of concordance is not always available to be tapped.

The more consumers are aware of a drug, the more they will request it; arguably, if they request it, then, being in agreement with their physician on its prescription, they are more likely to adhere to treatment.



Notes from the ebook: The Science of Evaluation: A Realist Manifesto

This is the external link to the e-book.

Chapter 1

As Bhaskar puts it, ‘Theory without experiment is empty. Experiment without theory is blind’ (1978, 191).

Society is made by, but never under the control of, human intentions.

Evaluation has traditionally been asked to pronounce on whether a programme makes a difference ‘beyond that which would have happened anyway’. We always need to keep in mind that what would have happened anyway is change – unavoidable, unplanned, self-generated, morphogenetic change.

Realist evaluation is a form of theory-driven evaluation. But its theories are not the highfalutin’ theories of sociology, psychology and political science. Indeed, the term ‘realistic’ evaluation is sometimes substituted out of the desire to convey the idea that the fate of a programme lies in the everyday reasoning of its stakeholders. Good evaluations gain power for the simple reason that they capture the manner in which an awful lot of participants think. One might say that the basic currency is common-sense theory.

However, this should only be the starting point. The full explanatory sequence needs to be rooted in but not identical to everyday reasoning. In trying to describe the precise elbow room between social science and common sense one can do no better that to follow Elster’s thinking. He has much else to say on the nuts and bolts of social explanation, but here we concentrate on that vital distinction, as mooted in the following:

Much of science, including social science, tries to explain things we all know, but science can make a contribution by establishing that some of the things we all think we know simply are not so. In that case, social science may also explain why we think we know things that are not so, adding as it were a piece of knowledge to replace the one that has been taken away. (2007: 16)

Evidence-based policy has become associated with systematic review methods for the soundest of reasons. Social research is supremely difficult and prone to all kinds of error, mishap and bias. One consequence of this in the field of evaluation is the increasingly strident call for hierarchies of evidence, protocolised procedures, professional standards, quality appraisal systems and so forth. What this quest for technical purity forgets is that all scientific data is hedged with uncertainty, a point which is at the root of Popperian philosophy of science.

What is good enough for natural science is good enough for evidence-based policy, which comes with a frightening array of unanticipated swans – white, black and all shades of grey. Here too, ‘evidence’ does not come in finite chunks offering certainty and security to policy decisions. Programmes and interventions spring into life as ideas about how to change the world for the better. These ideas are complex and consist of whole chains of main and subsidiary propositions. The task of evaluation research is to articulate and refine those theories. The task of systematic review is to refine those refinements. But the process is continuous – for in a ‘self-transforming’ world there is always an emerging angle, a downturn in programme fortunes, a fresh policy challenge. Evidence-based policy will only mature when it is understood that it is a continuous, accumulative process in which the data pursues, but never quite draws level with, unfolding policy problems. Enlightened policies, like bridges over swampy waters, only hold ‘for the time being’.

Chapter 2

It has always been stressed that realism is a general research strategy rather than a strict technical procedure (Pawson and Tilley, 1997b: Chapter 9). It has always been stressed that innovation in realist research design will be required to tackle a widening array of policies and programmes (Pawson, 2006a: 93–99). It has always been stressed that this version of realism is Popperian and Campbellian in its philosophy of science and thus relishes the use of the brave conjecture and the application of judgement (Pawson et al., 2011a).