HCCUs – The empty seat at the health care table

Rx: HCCU – For a Healthy American Health Care System


For the past half-century, policy on the provision and access to health care in America has been largely the result of discussions between two very large institutions, Medicare and its allied programs, on the one hand, and the private, for-profit insurance industry and its dependent provider networks on the other. While this might have seemed at times like a healthy and competitive debate between two different approaches to health care, in reality it has mostly been a monologue between two aspects of one medical system: billing and revenue collection by our government; revenue dispersal and definition of service by the insurance industry. Indeed, much of the policy and design of Medicare has been written by the insurance industry, often within the offices of Medicare itself.

What has been missing from that conversation, from the outset, has been the voice of the health care consumer – the patient. True, there are many separate organizations that advocate on behalf of the health care consumer and some of their successes have been worthy and important. Even so, the work of these organizations are, by and large, neither direct nor local representations of American health care needs vis-á-vis the consumer.

Fifteen years ago, I proposed, in a variety of contexts, the concept of local ‘Health Care Consumer’s Unions’ (HCCUs) as an essential, additional voice needed in the health care debates of the time. The proposal was largely ignored. Yet, as much today as then, it remains a critically important and entirely missing component of the ongoing health care debates in this country. No matter what direction the shape of our health care system takes in the future, the presence of HCCUs is the only way, I know, to insure that the voice of the consumer – their needs, their experiences and their ongoing concerns – can truly influence the kind of care and access to care they receive in a direct way.

– Red Slider, 2009

HCCUs – from monologue to dialog

What follows is a very rough outline of this concept.

The Healthcare Consumer’s Union

Definitions: A Health Care Consumer’s Union (HCCU) is a local, voluntary association of health care consumers/patients who utilize the services of a specific amalgam of provider services. Normally, these are organized around a local provider organization such as a hospital or HMO along with a variety of affiliated services which may be included within that organization or contracted to provide ancillary services. To the consumer, the local provider constellation serves as their primary source of health care services. In a single city or region their may be several such constellations around which local HCCUs might be organized.

A national HCCU may also be contemplated under this definition as an overarching organization which serves and supports the many local HCCUs, primarily addressing concerns of national scope and the collective interests of local HCCUs.  It’s lobbying focus would be on national agencies and bodies.

Applications:  The importance and role of the HCCU is independent of the outcome or type of national health care system that evolves from the current debate, though it may certainly be a critical element in shaping those outcomes. Whether we eventually adopt some form of universal, single-payer system or remain fixated with private, for-profit underwriting and management of our health care system, the HCCU remains the only way individual patients/consumers might have to directly influence the quality and nature of their care. While other efforts, such as those from advocacy groups and the medical/health care professions, are essential, those efforts do not really provide the consumer with a direct voice and control in matters which are of serious and immediate consequence to them.

Scope of Activities: What an HCCU actually does for its members (i.e. patients), will vary greatly in differing locations. Indeed, the need for establishing a network of local HCCUs is precisely to keep them from becoming overly large or complex in ways that would frustrate membership access and direct control, similar to what patients now experience when they confront the large provider/insurance networks that currently exist.

The following list is meant to be suggestive of the services an HCCU might offer its members:

1. Consumer/patient education.

2. Representing consumers in matters of policy affecting treatment, quality of care, convenience and access.

3. Represent individuals in matters of complaint or dissatisfaction with their health care.

4. Support health care practitioners in care decisions which are being resisted, denied or otherwise circumvented by the providing organization.

5. Present and advocate in matters of allocation and prioritization of treatment choices that have been decided by an active and informed membership.

6. Negotiate medical/administrative policies and practices of the provider based upon the needs and desires of the members.

7. Encourage the replacement of the current habit of forcing patients into competitive modes with respect to care with a more cooperative and sustaining address to their needs.

8. Provide safe and attentive forums for members to express their concerns with the quality and type of care they receive. Solicit member ideas for improvements of service and solutions to problems.

9. Serve as an advocacy, information and negotiation resource on behalf of its membership in matters of kind and quality of their health care services. This, with special attention to more vulnerable populations – those to old or young, poor, ill, uninformed, timid or otherwise disadvantaged in competition to secure needed health care services.

10. Break the cultures of silence that use “confidentiality” as a mask for manipulating divided and isolated populations of patients, wholly dependent on their readings of ‘secret’ data (“confidentiality” which is, of course, routinely broken when it serves the industry’s financial interests to do so.)

11. Provide a safe place and justifiable confidentiality to physicians, nurses and other health care staff who wish to report abuse and malfeasance in the health care industry without fear of reprisal.  To fairly and impartially investigate such claims.

Why an HCCU Might Succeed at these Tasks Despite Considerable Resistance from the Industry:

1. A patient/consumer union is in an ideal position to collect actual and unbiased supporting data about the real needs and experiences of its memberships in order to make its claims and demands stick.

2. An HCCU will have, in extreme circumstances, the power to negotiate on the basis that, where the minimum needs and requirements of its members are not being met, it may recommend to its members that they take their business elsewhere. Some HCCUs may even have the option to shop around to secure another organization willing to meet their needs.

3. An HCCU, distinct from either government or private providers and insurers, may offer medical policy proposals that entirely represent the needs of their membership. In the final analysis, this is really the only way to counter claims made by either of those entities in which policy is made on behalf, but not by , the consumer.

4. The very existence of HCCUs would force the industry to radically change its current market strategies which assume the client may be used to represent industry ambitions without significant challenge from the consumers themselves. Though the industry (hospital-insurance-provider complex) has already committed substantial advertising to desirable values in health care practice – choosing one’s own doctor, being treated with respect, getting the best and most up-to-date treatment choices, etc.), too often they have merely exploited those values to sell their products to the consumers. That need not deter consumers as members of an HCCU from demanding that the industry deliver on the actual and substantive values their advertising promotes.

5. An HCCU would be in a position to initiate class-actions on behalf of its members. As it now stances, consumers of health care are largely and deliberately isolated from one another and have little means of ascertaining that their individual complaints may be part of a pattern of experience of others as well. Even when they have such knowledge, individual patients rarely have the means or will to seek general remedies to their complaint.

6. The professional staff of an HCCU (doctors, lawyers, accountants, etc.) offer its members a means to respond to the decisions and policies of health care providers on an equal playing field; an ability which consumers do not now possess.

This concludes a brief sketch of a very complex idea. Indeed, it is so large that it will likely take a large consortium of health care advocacy organizations to establish a system of viable HCCUs or something similar. The alternative, to rely entirely on public interest advocacy as we now do, is fraught with difficulty and not likely to ever be able to achieve the results it wishes in any sustained and permanent fashion. Consumers do have power, as the history of organized consumer challenge to one-sided market engineering and public policy concerns has been amply demonstrated. Even in the most unregulated environments, the marketplace still depends on the cooperation of the consumer which it needs to buy its goods and services. HCCUs would add the consumer, as a potent and organized force, to challenge those who view health care as simply another market in which to exercise their rapacious appetite for profit and greed.

I would welcome your comments,suggestions and questions, of course. More, I would welcome your determination to take up the challenge to help design and implement the HCCUs or some similar idea that would put the consumer in charge of what their health care system will look like in the future. Most of all, we would encourage you to take on the job of organizing and establishing HCCUs in your own communities. Left to politicians and private enterprise alone, there is little chance the American health care system will offer much in the way of wellness and equitable health care for all Americans.
Red Slider, steward

California Advocates for the 21st Century



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