Distinguishing patient centered care, patient involvement in health systems, and patient power

A review of the BMJ spotlight on patient centered care

What is patient-centred care? How is patient-centred care superior to other concepts of care, if there are any? How should patient-centred care be delivered? What is the relationship between patient-centred care and the participation of the public and patients (PPI) in research, organization and delivery of health services within health systems? How is PPI related to democratic arguments for participation, arguments for patient empowerment and patient/social movements activism? The British Medical Journal is hosting a series of articles on these topics. Such series represents quite well the diversity and the complications of talks of participation in health care. While at the first sight most contributors to the series seem to be speaking about the same set of reforms – perhaps because they all rely on the ecumenical concept of ‘patient centeredness’ – they unfold very different threads and even address very different problems. This short review of the series – and adjacent articles in BMJ – follows some of these threads in the thicket of patient centeredness talks. It does so on the basis of two conceptual distinctions that may help navigating these complex issues.

 

(1) Patient-centred care ≠ PPI

PPI is just one particular approach to the governance of health systems, one that may or may not deliver better patient centered care in each specific task of the health system. For example, greater involvement in certain research steps and/or service organization may improves health services (all things considered), while involvement in regional health planning may not (or vice versa).

 

(2) PPI  ≠ patient empowerment

PPI is sometimes justified on the basis of democratic values, i.e. the empowerment of patients vis-à-vis medical and health bureaucratic elites, or the principle that patients should have a say on things that matter for their life, as their treatment or the management of their chronic condition. However, neither PPI is the only institutional implementation of these values, nor PPI has historically been only – or even mainly – implemented on these bases. PPI belongs to a broader shift in management cultures. Such shift is involving public bureaucracies, business management and even innovation practices in both corporate and academic research systems.

 

While these distinctions may seem obvious, the BMJ series tends to conflate these concepts, as it is clear in the presentation of the issue, which explicitly rejects them (notice that ‘patient centered care’ is an entirely uncontroversial concept that basically equates to the imperative of meeting needs of patients).

 

This spotlight series of articles on patient centred care explores how doctors and patients can work collaboratively to improve the way healthcare is designed and delivered so that it better meets the needs and priorities of patients.

Empowered patients are driving a social movement and spearheading a shift in roles “as profound as women’s liberation, racial equality, gay rights, and disability rights”. They are capable and motivated to help themselves and other patients to get better care and work with health professionals to improve services […].

Other articles in the series are much more nuanced. Indeed, they develop ideas that are in tension with these bold equations. We may group the contributions to the series according to whether they accept or reject distinctions 1 and 2.

 

(a) Moderate managerial reformers maintain both distinctions (1 and 2). These are medical professionals who want to improve the responsiveness of health services to patients’ needs by relying on patient experiences and patient reported outcomes. They do not call for revolutionary ‘participatory’ reforms of management, e.g. they would like to improve on existing cost/benefit and health services evaluation analysis on the basis of patient inputs. Coulter et al. (2014) and Nelson et al. (2015) belong to this group (ref 1,2).

 

(b) Radical managerial reformers reject 1 while the keep 2. These are medical professionals advocating for PPI on the basis of managerial arguments (e.g. the idea of co-creation and co-management). They also rely on anti-paternalistic language and on values as equality, but they are mostly concerned with the quality of services and patient centeredness and avoid making claims about patients’ power. Robert et al. (2015) is the only member of this group (ref 3).

 

(c) Anti-managerial revolutionaries reject both 1 and 2. Interestingly, these are often patient advocates, or people in the private sector. They heavily rely on references to social movements, and point out the disruptive potentials of networking technologies. Richards et al (2015) and deBronkart (2015) belong to this group (ref 4,5).

 

In group (a), Coulter et al. (1) denounce the gap between the amount data on patient experiences that the NHS has collected in the last years and the adaptations of the latter to these feedbacks. In particular, there is a repeated failure in improving on these issues:

 

provide appropriate information about prognosis and treatment; not enough involvement in decisions; weak support for self care; lack of empathy and emotional support; fragmented and poorly coordinated services.

 

As a conclusion, they argue for a ‘more coordinated approach. This should bring together the various data sources, enabling more in-depth analysis of these, exploring linkages and overlaps, developing and testing more efficient ways to gather the data, and working out how to ensure that the results are used for quality improvement’ and the establishment of national institute of ‘user’ experiences. Their framing of purposes and means of patient participation sits well within traditional approaches to public management. The authors do not call for decentralization and patient involvement, but for the establishment of a centralized institute for the study and elaboration of policy response to patients’ feedbacks.

Nelson et al (2) diagnose similar issues in the uptake of patients’ voices. Their solution is however institutionally different, albeit ideologically close to the one put forward in the previous essay. They argue that both collection and uptake of patient responses is much facilitated by online networks, and they propose to expand the use of such tools in health systems. Both papers do not fundamentally challenge the established hierarchies of power in medical bureaucracies. They clearly maintain that patient centered care ≠ PPI, thereby giving the reader a chance to reflect on some ambiguities ingrained in anti paternalistic and democratic arguments for PPI. In one sense, theirs is an important ‘dissident’ voice in this context.

Health organization analyst Robert (3), in a paper co-authored by a team of patients, caregivers and other analysts of health care, clearly reject the previous pre-PPI vision of the health system (which does not mean that they necessarily reject their policy proposals). They decisively argue for ‘co-creation’ of health services by patients and medical professionals (including managers and staff): ‘patients can and should take a more direct and ongoing role in identifying, implementing, and evaluating improvements to healthcare services.’ However, it is clear that their arguments rely on managerial theories, and practical experiences (they list a host of co-design techniques), without references to democratic values or to patient activism. In sum: PPI  ≠ patient empowerment.  It is worthy to quote their conclusions at length

 

We believe that mainstream approaches to improving patient experience place too much emphasis on metrics, lack critical reflection about the insights provided by survey methods (or knowledge of how to enact improvements on the basis of those insights), and are hindered by a deeply engrained perception of patients and families as passive sources of data rather than active partners in implementing change. Rather than marching relentlessly onwards to capture more patient experience data, we should be embedding codesign practices and values in our healthcare organisations.

 

These ideas belong to a long standing tradition within new public management and theories of co-creation in business and marketing. It is most interesting to reflect on their relationship with papers in the last group.

DeBronkart (4) employs anti-expertocracy arguments to challenge the established division of labour within health systems. He brings in his own example: he is a patient leader who was appointed as professor of internal medicine (Mayo clinic) on the basis of his personal knowledge as a patient. While he shares some epistemological assumptions with previous ideals of co-creations, he also highlights the role of networks in accelerating these processes, and neatly link patient communities with previous insurgent social movements:

 

Value in medicine depends on knowledge, and in the past two decades the flow of knowledge has undergone a state change, from closed system to open network. Not only is it possible today for patients to see (and tell each other about) the same information that clinicians see; they can also connect with patient peers near and far to discuss topics they care about. They have eyes, ears, and a voice that they’ve never had before. These are the precursors of autonomy, emancipation, and self determination.

 

A useful complement to de Bronkart paper is Richards et al (5), which indeed quotes de Bronkart and is co-authored by Coulter (Ref 1) and the vice director of innovation at the patient social network PatientsLikeMe, Paul Wicks. By bringing together authors in the first group of papers and professionals pioneering social network approaches to the reform of health systems, it probably convey the take-home message of the series, a take-home message of which we have explored some tensions and complications (alas selecting some topics at the expenses of others, notably the self-management of chronic patients, ref 6).

As many scholars have noticed, empowerment and democratic arguments resonate with broad shifts in state and business governance towards decentralized and user-centered models. Moreover, epistemological arguments such as deBronkart’s are the prelude to a powerful line of thought in favor of marketization that dates back to Hayek’s ‘The Use of Knowledge in Society’. For Hayek, the ultimate PPI would be a market system that coordinates that ‘diffuse and individual level knowledge’ that public managers and other elites cannot harvest.

We should resist the temptation of name-calling these reforms ‘neo-liberal’ if we despise them or ‘participatory’ if instead we like them. Such reforms ought to be evaluated case by case rather than wrapped with normative-laden and imprecise language. The quest for a better health system should not be black-boxed by participatory language. It is a substantive political question which of these reforms (and how) deepen the control of the public on health systems and the quality of services, and whether these two aims are always coherent with each other. It is also difficult question, as many of these changes are still unfolding and their significance and potentialities are yet to be seen. PatientOpinion chair Hodgkin has reminded us of this difficulty in another BMJ editorial dedicated to the topic (ref 7):

 

Where will these trends take us? Medicalisation and marketisation could stymie moves to a more social and holistic model of care; transparency exposes inadequacy but does not itself generate the drive to overcome it. The digital revolution could empower or enslave the citizen. It is too early to tell. […and] forces that are driving these shifts are much deeper than health policy.

 

Former NHS manager Nigel Crisp called for building strong intellectual foundations behind participatory practices (ref 8). Each article of the BMJ series provides a different perspective on these intellectual foundations. Participation can be a complement of managerial practices. Participation can revolutionize managerial practices. The only coherent medium for true participation is the market. All these perspectives deserve credit since they could help addressing important issues in health systems, as their adaptation to chronic conditions, ageing populations, and socio-economic unequal societies. Alas, arguing that the participatory turn is ‘spearheading a shift in roles as profound as women’s liberation, racial equality, gay rights, and disability rights’ will not deepen this discussion.

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References

 

(1) Collecting data on patient experience is not enough: they must be used to improve care BMJ 2014;348:g2225

(2) Patient reported outcome measures in practice BMJ 2015;350:g7818

(3) Patients and staff as codesigners of healthcare services BMJ 2015;350:g7818

(4) From patient centred to people powered: autonomy on the rise BMJ 2015;350:h148

(5) Time to deliver patient centred care BMJ 2015;350:h530

(6) The patient is the most important member of the team BMJ 2015;350:g7767

(7) Power to the people: what will bring about the patient centred revolution? BMJ 2013;347:f6701

(8) Patient power needs to be built on strong intellectual foundations: an essay by Nigel Crisp BMJ 2012;345:e6177

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