Public Engagement in Health Policy: International Lessons

Abstract

An inter-ministerial workshop on public engagement in health policy choices held by the WHO Regional Office for Europe in 2005 provided an opportunity to share international lessons. The workshop examined cases from a number of European countries including sixcases presented at the meeting. It was generally agreed that greater public engagement is essential due to theincreasingly difficult ethical choices that must be taken in health policy at national, local or individual level and the recognition that the public are co-producers of health. However, it was also apparent that there are, as yet, few clear models as to how to succeed in engaging the public in difficult decisions. Key lessons shared include: the need to establish as prerequisites for engagement, clear patient rights and structures for ongoing engagement, to provide timely information and education relevant to decisions,and to match the method of engagement to the nature of the issue under discussion drawing on a range of methods for choice, voice and representation.It was also apparent that voice, choice and representation could all result in greater disadvantage for hard to reach minority groups. The conclusion was that public engagementcannot be achieved by “quick fix” solutions, it requires long term culture change.

Key Words

Engagement, involvement, choice, voice, representation, rights,

The Authors

Graham Lister is Senior Associate of Judge Business School, Cambridge and Visiting Professor in Health and Social Care at LSBU. He is a sociologist and economist with a PhDin leadership and organisation behaviour. Following a career as health consultant and partner for Coopers & Lybrands, he became Chair of the College of Health and worked with the NSPOH and the Nuffield Trust.Current work includes: “Health Futures” for WHO Regional Office for Europe, New South Walesand UK, “Economic and Human Value of Public Health Intervention” for the National Social Marketing Centre, “Building Leadership for Health” and “Knowledge Management for Public Health” with WHO. He is 61, married with two children..

Elke Jakubowskiis a freelance health policy consultant currently contracted by WHO and several health ministries in European countries. She is guest lecturer in comparative health policy and health systems analysis at the HannoverMedicalSchool. A medical doctor and Master of Science in Health Policy, she worked for the European Commission, the European Parliament, and as programme manager for the WHO Regional Office for Europe. She is 41, married with two children.
Public Engagement in Health Policy: International Lessons

Introduction and background

The WHO Regional Office for Europe Futures Fora[1] are a series of meetings for high level policy-makers in European countries. They aim to generate insights into real-life decision-making issues that are often not available from academic sources. They provide an impartial environment for directors-general of health, chief medical officers and senior advisers to debate difficulties in policy-making. During the Fora meetings, the participants share their experiences of concrete decision-making issues, describe the solutions employed and draw the lessons.

The 2005 Forum on health systems governance and public participation[2] held in The Hague, Netherlands was organised to review the progress European countries are making in public participation in health policy and to examine whether there were any clear lessons emerging. The meeting discussed the trends driving increased public participation anda conceptual framework for public engagement. It reviewed case studies from: France, The Netherlands, Germany, Sweden, Belgium and Portugal. Finally it drew lessons and conclusions.

Trends driving public participation in health governance

Most European countries have been striving to increase the involvement of the public in health policy making over the past twenty years. The main drivers for this have been the perception that involving the public and extending choice will make health policy more responsive to patient and public needs, that it will improve decision making, by widening the range of views available, that it will increase acceptance of policy decisions and that it will lead people to take more responsibility for individual and community health decisions.

An examination of future trends suggests that a number of factorswill place even greater emphasise on the need to involve the public in policy decision-making at individual and collective levels over the next twenty years, these include:

  • Increased focus on chronic care: Medical advances mean that in most European countries more people survive into old age. Current figures suggest that the period people spend living with chronic conditions is increasing. Long term treatment and care invokes many more choices for the patient, their carers and the community.
  • Lifestyle related disease: Withthe rise of obesity, alcoholism, drug taking, sexual behaviour, work related stressand other lifestyle factors as major determinants of physical and mental health it is clear that unless the public engage with and take responsibility for their health, the cost of treatment and care will be uncontrollable.
  • Social isolation: The changing structure of families, with less marriage and more divorce, coupled with longevity is resulting in more people living alone or with elderly carers who become unable to cope. Formal care services will not be able to meet needs unless community voluntary organisations are mobilised.
  • Increasing cost of medicines:Current trends suggest that medical advances, stimulated by advances in genomics, stem cell research and combinatorial chemistry (making it possible to screen drugs morequickly) will accelerate over the next twenty years but at greatly increased cost. This will raise many ethical issues concerning access to medicines, for example genomics may lead to personal medicines tailored to individual needs, more effective but vastly more expensive
  • Consumerism: The trend of increasing consumer’s demand for personal choice and higher quality services will continue, it must be matched by engaging the public in taking responsibility for their health and well being.

These developments present a formidable challenge to the governance of European health systems. Futurehealth scenarios in which people’s lives make them ill and they rely on health services to get them better, are not sustainable. It is becoming clear that health and care services need a fully engaged public as “co-producers” of health if they are to be affordable[3].

Yet, in spite of substantial interest in and recognition of the potential for public participation in health policy decision making and other areas of health systems governance there is limited insight and evidence available on how public participation is ensured and how it actually improves health outcomes in different countries. Some countries have made progress in increasing public participation inpublic health decision making others have emphasised consumer choices of health insurers or providers as a way of influencing the market. Sometimes countries have found it necessary to rethink their approach to this issue, as examples, the United Kingdom abolished its Commission for Patient and Public Participation in Health and local Patient and Public Involvement Forums only 3 years after their creation and Iceland has just abolished patient representation on their hospital boards.

Conceptual framework for public participation in health governance

Governance is the exercise of political, economic and administrative authority in the management of a country’s affairs at all levels. This UNDP definition[4] encompasses the complex mechanisms, processes, relationships and institutions through which citizens and groups articulate their interests, exercise their rights and obligations and mediate their differences. One may argue that in democratic systems, ultimately all policy decisions concerning health and health system are made by elected representatives of the citizens, and are therefore implicitly “participatory”. Butelected representatives will not always be in a position to reflect the preferences of their citizens for particular health policy decisions, and may require additional measures to obtain the views of their citizens or of those particularly affected by a specific health policy. Equally it is not realistic to expect that detailed clinical health decisions can be readily understood by members of the public. In the end it is still national politicians that make majorpolicy decisionsand health professionals that take detailedclinical decisions,but public participation may help them in taking public preferences into account in major decisions, many decisions may be delegated to local bodies and the patients’ scope for individual choices can be much greater.

Public participation in health systems governance may be better understood by considering theroles in health decision making of the different stakeholders.

  • The state protects and promotes the health of the people,for example by:
  • Leading policy and building consensus on health priorities and ethical issues
  • Regulating health insurance, commissioning, service provision and professions
  • Establishingpublic health measures to protect and improve health and equity
  • Generating and using health intelligence
  • The public and patients take responsibility for health as:
  • Individuals and familiessharing responsibility for their own health
  • Participants in healthpolicy decisions through local and national processes
  • Responsible and knowledgeable consumers of health services
  • Active citizens involved in community actions for health
  • Other sectors of the economy take responsibility for health, as examples:
  • Employers protecting and improving the health of staff
  • Producers ensuring that products and advertising support health
  • Teachers ensuring that the principles of healthy living are understood
  • Healthcare workers providing information and education for health

Public participationmeans that citizens have the possibility to share in decision makingby expressing their views and preferences on health policies and by taking individual or collective choices, thereby becoming an active partner in the decision making process. This in turn depends upon a governance responsibility to introduce and support mechanisms enabling the public and patients to participate in the decision making process. This will include empowerment through providing access to information about health policy choices and mechanisms for developing and expressing opinions and making choices. It also implies aresponsibilityof citizens to take on opportunities to participate in policy decision-making and to make responsible choices. One of the problems countries encounter is that often the well educated, better off consumers participate, whereas disadvantaged groups may be underrepresented, thus it is important to consider the impact of such measures on health equity.

European health systems deploy many different measures to support public participation in health policy decision making. These may apply to general consultations on health policy issues, purchasing or commissioning of health services[5] or local provision. The measuresfall under three mainheadings: “voice”, “representation” or “choice”. Voice mechanism can be on the collective or the group level, for example, revealing general public views or the views of particular types of service users, such as organised patient groups or ethnic minorities. Voice mechanisms allow the expression of opinions and this may be a powerful influence on decision makers but they seldom confer formal decision making powers.Representation is usually at the system level of decision making, which means representation applies either in health management bodies at local, regional or national level or for institutions such as social insurance boards or community owned hospitals. This mechanism allows formal exercise of decision making within their prescribed authority, however, representative bodies may also express their “voice” on issues beyond their formal powers. Choice is most often exercised at the individuallevel, for example choosing amongst health insurers, healthcare providers or specific treatment and care options.Clearly the decision making ability in such cases is limited to the choices sanctioned by the health system. While individual choices may not seem to be directly related to system wide governance decisions, the collective effect of individual choices may change health policy by making some options unsustainable.A strategy for public and patient engagement needs to consider all threetypes of mechanism.

The participation of the public in health governance may be protected by a statement of “patient rights”, setting out basic principles for voice, representation and choice, plus rights and obligations in related areas such as provision of appropriate information.This may be supported by local and national patient/consumer advice organisations and an independent “ombudsperson”. This is also a source of empowerment and participation ensuring health governance responds to public expectations.

Country Experiences

France: National consultation on health policy

Consultation with individual citizens on health policy was inspired by Lionel Jospin’s ideas on public engagement. When he became Prime Minister (1997- 2002) a national exercise was undertakento consult people on the future of the French health system. The main aim of the 1998 consultation exercise was to involve people in decisions about the extent of coverage of the health insurance package. Specifically the consultation was intended to focus on the exclusion of certainmedicines, which were considered by experts to be clinically ineffective.

The consultation was organised with the help of public health centres,attendance was triggered by mass media reports. Expert panels were available at each meeting to answer questions. The consultation engaged 200,000 people in constructive discussions in more than 1000 events in 180 cities throughout France.

As it turned out the consultation showed that public opinion did not support the reduction of the scope of the insurance package or the removal of any of the medicines. The decision to remove 221 products from the list of reimbursable medicines wastaken 6 years later, with the support of the French parliament.

The consultation might merely have provided an opportunity for people to express their viewson this issue but instead turned out to be a forum for dialogue and lively and constructive discussion between health professionals, patients, associations and elected officials on a wide range of health policy issues. The consultation supported the adoption of legislation on patients’ rights and the quality of the health systemenacted on 4 March 2002.The act included a provision for patient associations to participate in the process of accreditation of health institutions in France.The health insurance reform act of 13 August 2004 further confirmed the stronger role of patients associations in decision making by ruling that patients’ associations have to be representedon the boards of the national health insurance funds.

The Netherlands: Consultation on choice of health insurance scheme

Until 2006the Netherlandshealth system offered lower and middle income groups choice betweensocial insurance providers (sickness funds) andchoice ofthe providers who held a contract with thesickness funds. The contents of the insurance scheme benefit package offered by sickness funds were set by law and were not subject to consumer choice. Citizens with earnings above a certain threshold were not entitled to participatein social insurance but could choose to purchase private health insurance. In practice the system left little choicefor most older and chronically sick people who would receive the same benefits package albeit administered by different sickness funds.

A substantial reform to this system was introduced in 2006 aimed atincreasing the focus of the system on consumer demand by allowing all citizens opportunities to choose between health insurance benefits packages. The reform also aimed to reduce bureaucratic barriers between sickness funds and private health insurance schemes, leading to more competition amongst health insurers.This reform was introduced following a dialogue between the government and all the main stakeholders in the system – sickness funds, health insurers, health providers and public and patient representatives.

The Netherlands Federation of Patient Consumer Organisations (NPCF) participated in the dialogue on designing the reform by providing opinions and organising consultations. The Federation is now entrusted with contributing to the monitoring of the new legislation with respect to its impact on consumers. It is important to note that consultation with NPCF and other organisations provided an input to the decision by political representatives on the reform measures but was not a substitute for the democratic process.

Dialogue on this issue created difficulties for the NPFC. While it provided an important platform for consumer representation in decision-making, consumer/patient interests differed between groups, making it impossible to achieve consensus on all issues. Such a coalition of consumer and patient organisations cannot guarantee to achieve consensus, their legitimacy is not based on representing the opinions of the general public but on presenting the views of patients and consumers based on their specific experiences of health and healthcare. It was therefore important to understand the points on which consumer/patient groups agree and to understand how and why they differ.

Germany: Choice, representation and voice

In the German health system governance is shared between federal and state governments with the management of the system delegated to self-governing health insurance funds and health care providers. Socialhealth insurance for low and middle income workers is compulsory and can be provided by a choice of social insurance providers (sickness funds) or private insurers. There is limited choice ofinsurance cover as the basic benefit package is set by law. However, funds can offer deductibles, bonus reimbursements, and special insurance services on a voluntary basis.Only 2 to5 % of all people in the social insurance system per year make use of their right to change health insurer. It is mainly the healthy that change to a different insurer, and most choose a fund offering lower contribution rates.Self-employed and people with earnings above a threshold can opt forfull coverage private insurance, where they can choose from a restricted range of benefits packages.