User Involvement in Health Care

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In discussing obstacles to such increased user involvement, the need to tackle professional attitudes, institutional barriers, and silo borders must also be emphasized [ 4 - 7 ]. However, some of the most fundamental barriers and borders remain largely untouched and beyond questioning, except by some at the margins of the discourse. In our project to increase the involvement of persons in health care and health research, we find four fundamental distinctions that are problematic: The four pairs are linked insofar as scientific research occurs overwhelmingly at the public group level, while professional practice, either at the individual or community level, is non-scientific.

We use non-scientific in the sense that the actual application of scientifically established evidence can never be validated by the standards of science, let alone the application of beliefs or judgments. The claim that practice is evidence-based or science-based confirms, rather than contradicts, this. Against the background of the revolution in electronic communications and computer competencies providing widespread online access and informatics and information storage generating large amounts of accessible big data , we see our project, outlined here in the form of an umbrella protocol, as an addition to the variety of technologies available to optimize user involvement.

But it represents a challenge to the systemic dichotomies above. All four of the above distinctions are implicit in the activities of INVOLVE in the United Kingdom, an excellent example of an attempt to increase user involvement in health and health care research, in contrast to parallel attempts to increase user ie, patient involvement in health care practice.

Such user controlled research has generally been based on:. The concept of control in research is not a simple one. It may be defined in different ways and open to different interpretations. Service users and their movements, however, have identified user control as the defining characteristic of research which advances user knowledge, rights, and interests.

Community-based participatory research is less radical and more in accord with the collaborative category of INVOLVE in that it promotes a specific two-way flow of information within the research group: Within the status quo, three types of reasons are typically given for involving users in research [ 12 ]:. Public involvement in health research is underpinned by epistemological, moralistic and consequentialist arguments.

The epistemological argument states that health research can benefit from the experiential knowledge and personal insights of patients, carers and service users. The moralistic argument states that the public have a right to be involved in any publicly funded research that may impact on their health status or the services that they receive. Finally, the consequentialist argument states that public involvement helps to improve the quality, relevance and impact of health research. We suggest that a second consequentialist argument is missing from this list, particularly relevant within the setting of person-centered care [ 13 ].

We see their research as primarily carried out in order to make better decisions for themselves, but they may offer to contribute the results to the wider population, either because it could eventually lead to better, or better-evaluated, interventions for themselves or because it could contribute to some wider public health goal or the good of others.

Within the conceptualization of person-as-researcher, those who lack the capability to function as effective researchers should be supported in their efforts to achieve that capability [ 15 ] through measures to increase health decision literacy and numeracy, especially in disadvantaged populations [ 16 ]. While we agree wholeheartedly with this principle, we note that questions of how far this support should go and at what resource cost must be part of the overall discussion of allocating scarce resources within a community, including those given to formal research.

Our project is designed to make some progress in this direction possible in the short term with minimal resources and to do so at the point of decision need, when motivation is highest. The tools take the form of interactive decision aids for a variety of specific health conditions, as well as a generic one that aims to support all health and health care decisions through its focus on key aspects of decision quality. The integration, by a simple and transparent expected value calculation, produces a set of scores for each option that constitute the opinion produced by the process—nothing more and nothing less.

For some criteria, the person is themselves the expert source of the BEANs, since they measure the impact of options on their personal life. The difficulty, burden, or bother associated with administration routes for medications or journeys to provider facilities are good illustrations of where different individuals may make very different BEAN assessments. All persons-as-researchers contribute their individual preferences to the opinion as criterion importance weights.

User and Carer Involvement in Service Planning

Many who consult the tools in the course of their research will be satisfied that they have received a personalized opinion for their own private use. But they can offer to contribute the results of their n-of-1 research to an n-of-n database, by registering with the site by named email and declaring any conflict of interest.

Their name will appear in any publication based on the aggregation of the individual results, though personal results will never be displayed. They receive feedback as part of the research team. It is vital to be absolutely clear on one fundamental principle: And we repeat that this approach is proposed as one method to be included in the portfolio of interventions needed to meet the very broad target of increased user involvement in a heterogeneous community.

From this point on the paper takes the form of an umbrella protocol for the condition-specific studies that will implement our approach. Our population consists of individuals researching their personal health using a more or less formal n-of-1 methodology to help decide among different health-related interventions and actions.

They regard themselves as interacting with health care professionals and institutions as an individual researcher, even though they are customarily assigned the status of patient. But we hope they will proceed, subject to confirming acknowledgment of being seen in a researcher role. Those who wish to see themselves mainly, or exclusively, as patients will be well catered for by patient-centered shared decision making [ 18 ].

There is increasing interest in user involvement in relation to community-level activities, such as the development, prioritization, and delivery of health care services; the evaluation of specific interventions in Health Technology Assessments; and the determination of reimbursability for drugs and devices [ 1 ]. These are outside the scope of our project, though the approach we suggest is modifiable to this type of policy decision. Members of the community are entitled to adopt whatever position they wish in relation to their individual interactions with health care professionals and institutions.

That includes their interactions involving decision making, subject to any legal requirements, including giving informed consent. Our decision resources are, however, designed explicitly for those who wish to be able to involve themselves in clinical decision making as persons who are empowered emancipated, enabled, armed by their prior research.

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They are also intended for those who wish to keep open such positioning as an option, even if it may not eventually be exercised. Researching one of our relevant tools will yield an opinion, based on principles that they have accepted for their research purposes and inputs they have supplied. We assume that the person opts into obtaining the opinion as part of the research basis for their decision involvement and emphasize that they are free to reject its content or use it in any way they wish in any subsequent decision communication with a clinician.

Our condition decision-specific aids eg, Should I have a prostate-specific antigen [PSA] screening test for prostate cancer? What treatment is there for my osteoarthritis? We believe it is these features that carry the potential to increase user involvement, especially for the population defined above and in relation to the specified type of involvement. While the increased scientific research on values and preferences needed for health decisions [ 21 ] proceeds, along with that on information and knowledge, clinical decisions are being made second by second.

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More importantly, we should be asking questions that are important to persons-as-researchers. As a result, and as part of our work to improve decision quality in person-centered care, we publicly offer, as research resources, decision support tools that do not require answers to many of the fundamental questions being pursued in scientific research. This is in contrast to most of the decision aids and guidelines produced within both the evidence-based and shared decision-making philosophies, which emphasize current uncertainties, ignorance, and the need for caution.

We therefore make our offers on the basis that the underlying theory and principles of the aids, as well as the nature and provenance of their empirical inputs, are made clear before any engagement with them or buy-in is possible. The user is required to have read and accepted the contents before proceeding. We therefore assume that they are making an informed meta -decision about whether to engage with the aid before any further involvement, even as a researcher.

It is ethically questionable [ 26 - 28 ].


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The aids make absolutely no claim to be descriptively based in human decision behavior [ 29 ]. In fact, in key respects, especially their numerical format and expected value basis, their descriptive inadequacies are a necessary condition of their having something new and important to offer [ 30 ]. The aids are presented with as much transparency as possible, in order for the person to be clear about the principles underlying the opinion that emerges.

We emphasize that they can reject the opinion of the aid as a contribution to their research, having generated it, but advise that they should consider not even engaging with it if they disagree with the bases spelled out upfront. As with most other terms in this area, debate surrounds its meaning. We regard this elicitation procedure as the only one that is practical, in comparison to the more complex, normatively appealing procedures such as standard gambles, time trade-offs, and swing weights, which we have tried and found operationally lacking [ 19 ].

The key point is again to make clear to the respondent that it is their importance weights, so defined, that are entered into the personalized opinion that the aid will produce for them as part of their research.


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In regard to the performance rates for options on criteria, our tools are not designed primarily as information aids. They are therefore clearly different from most other aids that assume a better decision must be an informed decision. We do provide links to high-quality sources of information so that the person-as-researcher can opt in to them if they choose. But it is made clear that our primary aim is to provide information in the form of the BEANs for the performance of each option on each criterion.

In the absence of robust evidence, they may be best elicited by expert-based elicitation. Opt-in pop-ups provide the provenance of the BEANs, or links to their sources, and the person-as-researcher is free to follow these as further clues to trustworthiness. Why do we not regard these as vital to consult in order to benefit from the aids? Achieving success in this task is difficult [ 32 ], perhaps not surprising in the light of the failures of the educational and socialization systems to produce a health literate and numerate population.

The only information our person-as-researcher needs to acquire is what the aid will provide and its bases—and what it does not offer. However, there is an important exception. The person-as-researcher does have an important role in supplying, at the point of decision, the BEANs for criteria where they are the expert. Personalized elicitation of the BEANs for such criteria is therefore appropriate—not the use of group averages such as those produced by discrete choice experiments. Note that this rating role of the user is conceptually completely different from the role they play in assigning an importance weighting to such criteria, relative to all the others.

Uncertainty is dealt with by offering quality-weighted and unweighted opinions. We make clear that the quality adjustments in the former represent, no more and no less, the judgments of the quality of the BEANs made by the team responsible for their production. But we stress that the opinion emerging is not offered as, and should not be interpreted as, a medical opinion, legally speaking. Most of the key requirements for accessibility, usability, and functionality of patient-centered decision support, whether they come in the form of computer-based decision aids or traditional professional interaction, apply equally to the design of aids to be presented as research resources [ 34 - 36 ].

Nevertheless, the re-conceptualization from patient to person-as-researcher does have major implications in the tone of address and register adopted. Most importantly, our decision aids should not be seen in any way as providing care, or as a way of delivering better care. However, they also provide a way that users can add the results of their engagement to those of others, if they choose. User involvement is for a purpose, and our central aim is to improve decision quality.

A measure of effectiveness in this regard is obviously needed.

User and Carer Involvement in Service Planning | Health Knowledge

The assessor eg, the person is responsible not only for 1 weighting the criteria of decision quality in terms of their relative importance, but also 2 rating the quality of a decision just made on the criteria. MDQ is generic in the sense that the criteria are phrased without reference to any particular decision or context.

Information relating to the specific decision condition and setting must be provided if at all outside the MDQ instrument, such as in the wider condition-decision support resource where it will often be situated. As with all implementations of the simple weighted-sum version of MCDA, MDQ combines a set of importance weights for multiple criteria with performance ratings for each option on these criteria and calculates the overall score as the expected value of these components.

The MDQ score, unique to the person and to the particular occasion, is shown with the partial contributions of each criterion to it displayed in segments. Its weighting and rating are highlighted when the segment is touched or the cursor is rolled over it. An example is provided in Figure 2 and an illustrative video in Multimedia Appendix 1. Apart from serving as an outcome measure for evaluating the decision-making process, MDQ represents an aid in itself and, being generic, can be used in conjunction with any of our condition decision-specific aids.

Independent of any health care context or setting, MDQ alerts the person-as-researcher to one set of criteria for a good decision and asks them to express their importance weights for them. Even if these weights are not widely different from each other—not unusual since the criteria have been included because of their importance—the explicit attention given to them has the potential to influence the remainder of their decision-making research.

Having rated the decision ex post on the same criteria, the person receives a dually personalized assessment of the quality of their decision. They are also provided with insight into the priorities for future quality improvement by being shown the quality gains possible from improved rating on each criterion, weightings unchanged.

Achieving perfect rating on this criterion would increase their score by 0. Feeding back the result of the same calculation for each of the criteria generates a personalized list of future priorities. If an associated clinician completes the parallel MDQ instrument, the bases for a decomposable measure of concordance are established. A prescription for improved shared decision making in future is generated, if desired by both parties.

MDQ can also serve as a patient-reported outcome measure PROM , when the decision is conceptualized as one of the outcomes of a decision-making process. Or alternatively, it can be seen as a patient reported experience measure PREM , which reflects their decision-making experience [ 39 , 40 ]. Apart from a few aids also based on an implementation of MCDA notably the Analytic Hierarchy Process , the vast majority of decision support tools on offer are not designed to produce an opinion in the form of numerical scores.

They aim to support the person, normally regarded as a patient, by presenting information and value clarification exercises. They are then encouraged to make up their mind by taking into account and bearing in mind the pros and cons, without being offered explicit synthesizing principle or required to engage in numerical quantification or calculation.


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We can capture the difference from their aids succinctly by referring to the majority as being grounded in verbal multi-criteria decision deliberation as opposed to ours in numerical MCDA. Note that one of the key contrasts is expressed here as the verbal-numerical, rather than qualitative-quantitative one. All aids of both types are necessarily concerned with quantifying of magnitudes. Most likely this is attributable to their failure to provide the person with powerful enough ammunition to move clinicians away from their preferred consultation structure and preferred course of action, reflecting tradition, training, and time constraints.

This is particularly likely to happen in the situation where the evidence is low [ 43 ]. Apart from being provisional, the opinion from our aids will always be questionable by the normative standards built into many checklists for decision support tools [ 44 , 45 ]. Experience so far shows there are many difficulties in carrying out genuinely unbiased empirical evaluations of person-centered decision aids in the clinical context—some methodological, some professional, and others legal.

What and where is the evidence of the impact of resources such as ours on any aspects of clinical decision making, notably user involvement and empowerment? A substantive, not merely rhetorical, response is to ask what and where the evidence is concerning the usual clinical decision-making process.

Despite vast efforts to penetrate it, dating back to the pioneering work of Elstein [ 46 ], our aids will, by comparison, be shining white boxes. In person-centered care, it is surely appropriate to acknowledge individuals have the same right in regard to their health decisions and behaviors. Hence this high-level protocol, designed to set out the relevant issues. In our opinion, all user involvement interventions should be evaluated with a comparative methodology using the same empirical comparator, not a normative checklist. In other words, evaluation should be based on the same principles applied to drugs and devices.

Unfortunately, experience shows the ethical and professional barriers to this may be considerable. That direction is more likely to be towards institutionalized forms of user representation and consultation than towards the more profound involvement envisioned within user controlled research, participant action research, and other emancipatory movements.

Decision time is always now , so our tools are developed and maintained within a living philosophy [ 31 ], especially, in relation to the performance ratings, where living evidence-based network meta-analyses will need to be complemented by expert elicitation, to improve the quality of the BEANs for many person-important criteria. Elicitation could possibly be in the form of living expertise-based network meta-analyses [ 47 ]. Our decision resources are designed to be practical for use at home in the community. Those undertaking similar programmes, whether in primary care or hospital based, will find ideas and examples in this book to inspire and guide them.

Chapter 2 What is already known about involving users in service transformation? Chapter 8 Where next for user involvement? User Involvement in Health Care. Added to Your Shopping Cart. Description How can the needs and perspective of patients be incorporated in the design and redesign of health services?