ALBERT JOVELL

Spain,

Ashoka is saddened to report that Albert Jovell has passed away from cancer in November 2013. The profile below is dedicated to his memory.

This profile below was prepared when Albert Jovell was elected to the Ashoka Fellowship in 2009.

INTRODUCTION

Albert Jovell is placing patients at the center of the healthcare system in Spain, giving them more decision-making power in issues concerning their health. To do this he is firstly equipping them with appropriate knowledge regarding their treatment and conditions. Beyond empowering them on a personal level, Albert has also placing patient representatives in the governing and advisory committees that steer the healthcare system. To consolidate and spread his work, he has designed and is engaged in a series of advocacy programs across Spain and Europe.




THE NEW IDEA

Albert is redefining healthcare in Spain through a series of initiatives aimed at giving patients a central and participatory role in decisions concerning their health. On one hand, he is launching a series of research initiatives that focus on the patient’s experience within the public healthcare system and measure the impact of putting them in charge, highlighting possible improvements such as reductions in doctor’s visits and hospital admittances and an increase in patient’s compliance with treatments. He then uses these results to convince doctors and other professionals of the benefits in partnering with patients. Albert also works through the Patients Forum to advocate with healthcare policymakers to include patient representatives in the governing bodies of hospitals, healthcare policy boards and other institutions. The result is that both patients’ experiences and opinions are integrated into personal and institutional medical decisions.

Empowering patients with the knowledge and confidence necessary to understand and deal with their condition is central to Albert’s work. Research shows that the sense of independence that comes from learning how to care for oneself is critical in reversing the negative emotional and physical effects of long-term illnesses and boosting patients’ confidence and strength to fight back. Albert’s Patients University offers “expert patient” training courses and disease-specific itineraries that take individuals through the key phases of a disease, preparing them for every situation. These courses also prepare patients to partner with doctors in making important decisions concerning their health. Courses and materials are also available for family members and caregivers of chronic and acute patients as well as others interested in living healthier and more autonomous lives.

By leveraging readily available resources such as University and professional research teams, disease-specific patient associations and healthcare-related businesses, Albert’s healthcare initiatives are expanding quickly. He has also established the Patients University online so that content is free and available to anyone who is interested in it. In order to replicate throughout Spain and assure equal access to all, Albert is channeling his initiatives through local organizations that have already joined his Patients Forum, which currently includes over 685,000 members throughout the country. This allows him to engage patients both at the local and national levels to develop programs and influence public policy.




THE PROBLEM

Recent surveys show that despite considerable technical improvements over the last years, the public healthcare system in Spain still fails to meet important patient needs. Further, little research has been conducted to understand their needs and recommend improvements in how they are treated. Patients are rarely represented on boards or commissions that decide how healthcare institutions are designed and run. This is often due to the confrontational stance many patient organizations are forced to take to defend their rights and the subsequent resistance they receive from healthcare officials.

The Spanish healthcare system, which promises equal and full healthcare to all, is also encountering serious economic challenges as the population ages and requires more services, and a smaller working population contributes less income. Many basic competences, such as providing further information on advanced treatment, are being delegated to surging businesses and organizations that need to make a profit by offering healthcare.

Research on health literacy has shown that many long-term patients are unable to fully understand their condition and therefore feel incapable of cooperating with doctors in a significant way. Chronic patients, of which there are approximately 15 million in Spain, are also often affected by feelings of uselessness, lack of autonomy and isolation, which can play a negative role in their overall health. However, recent social and medical studies indicate that the participation of people affected by a long-term illness— whether patients, family members or caregiver—is vital to receiving proper treatment and taking adequate care of themselves.

Despite this fact, patients often find themselves emotionally and intellectually overcome with technical and complex terms as well as with the hard lifestyle adjustments they have to make, and often fail to communicate important information to doctors and professional healthcare workers. Eventually, the lack of communication isolates them from participating in important decisions, and poses a serious threat to their health and to receiving the best possible treatment.

Recent studies have revealed that communication is an important contributor to health and recovery. One in particular showed that long-term diabetic patients who received specific training to gain a better understanding of their condition and treatment were found to adhere more to treatment instructions, resulting in direct improvements. Furthermore, a training program in the UK that taught chronic patients how to deal with key aspects of their illness and to help others do the same had similar results. In this case, 38 percent of the participants experiencing a decrease in their perceived sense of pain, breathing problems, fatigue and depression without having changed anything in their treatment.

In an era of free information, many patients are already finding ways to inform themselves through the Internet. Although some of the available material is useful, a large amount is inaccurate, misleading and poorly organized. Patients who are able to gain significant knowledge about their condition often find themselves in confrontational situations with their doctors when they question decisions on treatments, resulting in a loss of individual self-stem and low compliance with therapy.




THE STRATEGY

To transform the healthcare system, Albert has taken key steps to engage patients and professional healthcare workers as well as institutional administrators and policymakers. Starting with the Patient’s Rights Declaration that Albert promoted in 2003 and the subsequent creation of the Patients Forum, he is working with patients to identify and articulate specific needs, deficiencies and possible improvements in the healthcare system. He has also partnered with University institutions to carry out studies that provide the backing for these recommendations, as well as to monitor and flesh out the positive findings of initiatives involving patients in the healthcare process. These studies offer convincing reports to administrators and policy makers as well as to professional healthcare workers’ associations, raising awareness promoting advocacy through the Patients Forum. Through these and other strategies Albert is also building presence and visibility in decision making forums composed of doctors and administrators.

Aware of the potential for long-term patients to overcome difficult situations and support others to do the same, Albert is concentrating his efforts on empowering them to understand and seize control of their health. In partnership with the Autonomous University of Barcelona, he has launched a virtual Patients University, which reaches chronic patients as well as family members, volunteers and others. Albert connects the perspective the Forum offers with the University structure in order to compile, filter, simplify and organize information related to specific sicknesses in formats that are useful to patients. Similar to traditional University courses, patients can access sections or subject-specific “classrooms” which offer didactic information, training and other activities all focused on making the interested patient a certified expert in his or her condition. The classrooms are created from the patients’ perspective, guiding them through their experience with the disease step-by-step with information and resources on causes, remedies, advice and checklists for doctor’s appointments, difference between treatments, and further reading. As patients become more knowledgeable about their illness, they gain the confidence to take control of it as well as to help their doctors make better decisions concerning their treatment.

Beyond virtual resources, the Patients University also offers on-site training to certify participants as “expert patients.” These courses allow them to improve their ability to control their sickness as well as help train others. Classes are mainly given by fellow patients since patients are often intimidated by doctors and learn more quickly through someone who can directly relate to their experience. The training is implemented in partnership with universities such as Harvard and Stanford, following the British NHS Expert Patient Program model, which adds an important element of prestige to the certification.

To financially support this key structure, Albert has involved businesses—mainly pharmaceutical companies with products related to particular illnesses—as sponsors for the research and maintenance of these “classrooms” that host information and activities related to a specific health condition. These companies, among other sponsors, support on-site training courses in different locations, generally coordinated through the network of Patients Forum member associations, making information and training free to patients and other interested citizens. Albert is helping these companies leverage their corporate social responsibility policies by offering them participation in these programs.

Currently, Albert is working to spread the Patients University throughout the 17 autonomous regions in Spain. Due to the fact that most healthcare competences have been transferred to regional governments, the healthcare quality from one region to another varies considerably, provoking serious inequalities in patient participation. Albert plans to use the Patients University program to engage patients locally through their specific organizations. In the process, he will identify key partners in order to create local chapters of the national Patients Forum that can work on regional needs and deficiencies and pressure for changes both at the local and national levels. Albert is also involved in a series of international collaborations with entities in the UK and the US, and has integrated many of these innovations into pan-European initiatives such as the European Patients Forum.




THE PERSON

From a young age, Albert knew he wanted to be a doctor and improve the lives of patients. As a son of a physician in a working-class city, he followed his father from house to house visiting patients and caring for them. When he began studying medicine in University, he became concerned by how technical and specialized the practice had become and stunned at the differences between what he learned from his father and the University’s impersonal view of what it meant to be a doctor. During his medical studies, he decided the best way to change this and recover the human aspect of medical practice was by directly influencing policy. During the next few years Albert went on to obtain degrees in sociology and political science, as well as a series of Master’s degrees and a Doctorate at Harvard University, all related to different aspects of public health, health policy and healthcare management.

In 1992, while finishing his doctorate at Harvard far from home, Albert received a phone call informing him that his father had been diagnosed with cancer. This call brought Albert back to Spain and put him in the shoes of a patient’s family-member. During this difficult period, he learned firsthand of the communication struggles and other problems that patients face when dealing with chronic diseases. He also discovered how often doctors fail to incorporate the patients themselves in the decision-making processes concerning a diagnosis.

Albert left a job in the Government Healthcare Department to develop his initiatives through the Josep Laporte Foundation in 1999. Two years into these projects Albert himself was diagnosed with cancer. Instead of abandoning his idea, he decided to accelerate his efforts. During his treatment he coordinated the Patient’s Rights Declaration and the successful launch of the Patients Forum. Albert has since recovered from his main cancer treatments through a very intense process in which he, as a patient, became an active part of his own medical team.




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