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ALESSANDRO LIBERATI

Biographical sketch
Alessandro Liberati (Genoa, April 27,1954 – Bologna, January 1, 2012) was an Italian health care researcher and clinical epidemiologist. Having graduated in Medicine from the University of Milan in 1978, he obtained a postgraduate degree in Hygiene and Preventive Medicine from the same university in 1982. Since before his graduation he started collaborating with the Mario Negri Institute for Pharmacological Research in Milan, where he led the laboratory of clinical epidemiology for a dozen years. His commitment to effective and patient-oriented care, strengthened by postgraduate research periods at the Harvard School of Public Health and at the RAND Corporation, led him to be one of the earliest advocates of the fast-growing "Evidence-Based Medicine” movement, addressing uncertainties on the effectiveness of health care interventions and excessive variability in their use through the systematic assessment of existing medical knowledge (systematic reviews). One of the founders of the Cochrane Collaboration, an international network of researchers producing a collection of systematic reviews of the medical literature, he started the Italian Cochrane Centre in 1994 and was its director for eighteen years. In 1998 he moved to academia becoming associate professor of Medical Statistics at the University of Modena and Reggio Emilia. Rather than restricting himself in an academic role, he fostered more transparent clinical practices and health policies stepping into health services as well. The following year he also became director of CeVEAS, a newly started regional Evidence-Based centre located in Modena aimed at supporting clinicians’ and health-care policymakers’ decisions. In 2002 he started a Research and Innovation Program at the Emilia-Romagna Regional Health Care Agency, to favour patient-oriented clinical research bringing together clinicians, researchers, health care institutions, patients and the industry.

Later in the same year he discovered to be affected by multiple myeloma. In 2003 he underwent two bone marrow transplants and, thanks to his well-controlled clinical conditions, he could keep on pursuing relevant work towards a patient-oriented research, bringing with him his experience as a patient and also as vice-president of Italy’s National Committee for Health Research and member of the Research and Development Committee of the Italian Drug Agency. In a letter published in the Lancet in 2011, advocating for a more patient oriented research, he wrote: “I have had the opportunity to consider from more than one perspective the mismatch between what clinical researchers do and what patients need. I am a researcher; I have responsibility for allocating funding for research; and I have had multiple myeloma for the past decade”.

In late 2011 his clinical conditions turned serious until his death on January 1, 2012. He left behind a wife (Mariangela) and two daughters (Elisa and Valeria).

Acknowledgements about his work
Improving patient care through knowledge was the guiding principle of Liberati’s work, well before becoming a patient himself. Many colleagues and friends portrayed his professional and human experience thoroughly in several obituaries. Maurizio Bonati (head of the Department of Public Health at the Mario Negri Institute) highlights as “he started working as a young physician with drug addicts, prescribing methadone off-label (from 1984 he coordinated a national pilot project on quality of health care in juvenile drug addiction)” and that “a commitment on being on the patient side characterizing most of his later work, with the launch of the “Partecipasalute” project (www.partecipasalute.it) in 2003 to build a strategic alliance between citizens/patient groups and the medical community”. Nicola Magrini (head of CeVEAS) and Richard Smith (former editor of the British Medical Journal) write in the British Medical Journal as “Alessandro’s revolutionary fervour had clear aims: improving the quality of evidence available to patients and their clinicians”. They cite what Liberati wrote on the same journal in 2004, sharing his personal experience as patient: “research results should be easily accessible to people who need to make decisions about their own health”; and highlight as Liberati was “trying to encourage researchers to concentrate on research that mattered to patients not to their careers or to drug companies”. Back to Liberati’s words, “Why was I forced to make my decision knowing that information was somewhere but not available? Was the delay because the results were less exciting than expected? Or because in the evolving field of myeloma research there are now new exciting hypotheses (or drugs) to look at? How far can we tolerate the butterfly behavior of researchers, moving on to the next flower well before the previous one has been fully exploited? Unfortunately this is possible in a world where clinical research has become dominated by commercial interests. When you are a patient you wonder how (we) researchers can keep forgetting the principle that the priority should be collaboration for better hypotheses, not competition.” [5]

So in Liberati’s view, if research is made to answer patients’ relevant needs, collaboration is key. Lorenzo Moja, Roberto D’Amico and their colleagues from the Italian Cochrane Centre highlight his firm belief that “collaboration between researchers, drug companies, health systems, universities and patients is essential for improving research”. Highlighting “his respect for what researchers and medical professionals can learn by taking account of the views of patients”,  Sir Iain Chalmers, one of the founders of the Cochrane Collaboration, reminds us what Liberati wrote in 1997: “the challenge is now for the medical profession…to develop alliances with consumers to move forward to a wider recognition of the uncertainty and weaknesses of medicine and the biases in the processes of setting research priorities”. Giuseppe Traversa and Alfonso Mele (from the Italy’s National Institute of Health) add that within a health system “he considered research as an integral part of its mission, especially where lack of commercial interests prevents the possibility of private investments”. For Liberati, “being a researcher is a moral duty for health care professionals and a service to patients and to the wider community”. [6] As seen before, he often used his own example as a patient to show the need of different strategies in health care research. Magrini and Smith remember that “Just a few weeks before he died, Alessandro published a letter in the Lancet in which he looked at the 1384 studies of multiple myeloma available in July 2011 and discovered that only 10 had overall survival as a primary endpoint and that there were no head to head trials of different treatments. In other words, few of the studies were answering the questions that matter most to patients.” [4] He concluded that “If we want more relevant information to become available, a new research governance strategy is needed.” [1] Keeping in mind that research is cumulative and should start from what has already been done, in order to highlight and address grey areas. “He maintained that one of the main functions of systematic reviews was identifying areas of uncertainty”, writes Marina Davoli (head of the Lazio Epidemiology Department). “He considered the need to face and address this uncertainty, with a transparent and ethical attitude”. In Liberati’s view, transparency was a way to favour knowledge transfer and also to highlight and prevent from conflicts of interests of sponsors and researchers.

International reputation
Liberati gained an early international reputation. In keeping with Iain Chalmers: “Working with Tom Chalmers, Alessandro became one of the pioneers of evidence synthesis, specifically, analyzing controlled trials of treatments for early breast cancer and assessing the effects antibiotic prophylaxis in patients in intensive care ... In October of 1993, Alessandro was one of about 90 people who founded the Cochrane Collaboration, and on 28 June 1994, with support from the Istituto Mario Negri, the Italian Cochrane Centre was born. I was specially pleased by this development because it was the first challenge to ‘Anglophone imperialism’ within the evolving Collaboration. The early international respect earned by Alessandro and his colleagues in evidence synthesis was reflected in the fact that they were commissioned to assemble an evidence base to inform the first national cancer guidance in England. This set a high standard for future work on the development of clinical guidance by the National Institute of Clinical Excellence”. [7] He was on the editorial board of prestigious medical journals such as the British Medical Journal (house organ of the British Medical Association) and the Annals of Internal Medicine (of the American College of Physicians) and was among the “driving forces” (as highlighted by Geoff Watts in the Lancet ) of international groups of researchers developing methods to assess and explicit the quality of medical evidence (such as PRISMA ) and to facilitate medical decision-making (such as GRADE ). He was author of hundreds of scientific publications in international and national journals.

Researcher and teacher in Italy
In Italy, Liberati had an early impact too, as noted by Watts: “In 1986 he founded Gruppo Interdisciplinare Valutazione Interventi in Oncologia, an interdisciplinary research group for cancer care evaluation that recruited general and community hospitals to undertake multicentre controlled trials on the effectiveness of therapeutic interventions and the quality of care in oncology” [15]. But in Italy his role wasn’t really brought out. As Traversa and Mele note, in spite of being in relevant National health research committees and the engine of countless research initiatives, Liberati “had not been appointed either full professor or director of a National institution yet. Even the most detached person can see these as two huge sentinel events of malfunctioning of our institutions”. [9] Gerd Antes notes that “Alessandro’s personal integrity was a vital ingredient during an era of Italian government administration not always characterized by this virtue”. [15] The Italian Minister of Health, Renato Balduzzi, who had just stepped in a “technical government”, writes that “The Italian Public Health community loses one of his most insightful researchers, a prominent member of the International scientific community and a bright innovator. He was able to analyze and address with honesty, balance and competence the muddling world of biomedical and health care research regionally, nationally and internationally. We are left with his rare example of humanity and rigour, kept with delicacy until the end.”

As for his teaching activities, Liberati taught thousands of fellows, among students and colleagues, how to look at and make good use of the available evidence, and how to prioritize and address relevant questions through a “patient oriented” research. In keeping with Moja and D’Amico “Alessandro was an exceptional teacher, both within and outside academic institutions”. [6] His books are milestones of the Evidence-Based Medicine movement in Italy, supporting many students and practitioners learning/using the principles of “how to make the best use of the available medical knowledge” and “when and how to produce new knowledge” to improve patient care.

A charismatic networker
Several acknowledgements of Liberati’s open and friendly attitude can be found, and of how such attitude for interpersonal relationships was key for the work he was able to set up, helping him to have many sincere friends too. In keeping with Bonati, he was “precursor of real-life social networks, in every kind of situation he tried to put people and ideas together, even quite divergent ones, putting his smile in all his adventures and jokes”. [3] Magrini and Smith describe him as “a gentle and convivial revolutionary, regularly hosting the Libertrophy, a weekend party of fun and games at his family home in Tuscany“. [4] Antes notes that “he was always friendly and open. At the same time he could be cheerful and light-hearted, but also serious”. [15]

A farewell page and a memory book were posted on the Cochrane Collaboration website, where tens of memories about his human and professional legacy can be found. Dave Sackett, one of the founders of the Cochrane Collaboration, writes that “He combined scientific rigor with such warmth and humility that he repeatedly confounded critics, gently disarming their rhetoric, appealing to their better instincts, and winning arguments with sweet reason. And he was such fun to be around and to work with!” His respect for different opinions is also reported by Traversa and Mele: “In a country where we frequently see personal conflicts but lack of meaning, he was able to show how to respect people who have different opinions even if we radically disagree with them, avoiding being trapped in the pointless polarization when people are classified either as friends or enemies”. [9]

Because of his work and his networking attitude, Liberati travelled frequently across the world. “In describing his personality”, says Luca De Fiore (head of Il Pensiero Scientifico publishing house), “his travelling attitude deserves a special mention. Thinking back to his letters, e-mails and phone calls, almost every one of these was from a station or airport, from very different places like a hotel in Singapore or a boardinghouse in Patagonia.”

In his last months, Liberati had a blog where he talked about his disease but also exchanged comments with his friends on several themes, news, sports news (he was fond of soccer and a great supporter of Internazionale) and topical subjects. His naming the blog “Abbasso gli smidollati” denotes his elegant irony, used here to refer to his own bone marrow disease (a very tentative translation could be: “down with spineless people”). Hundreds and hundreds of posts can be found from him and his friends, also after his death, revealing his ideas, many tracts of his personality and how huge his network of friends was. Before his death he prepared a farewell letter that was published on that blog the same day he left his family and friends (following is its English translation) :

To all my friends and… fellow travellers

December 17, 2011

Dear All, We’ve travelled a long way together, perhaps more so than we have fully realised. In these days, when I have inevitably been taking stock, I feel I have to thank all of you for the small parts of life that we have shared – some inside and some outside Giuseppa [Editor’s note: Giuseppa (or Josephine), Alessandro’s nickname for an air-filtering machine in his hospital room, became the subject of many of his final blogs. Giuseppa, in this context, also denotes his most recent hospital stay.] – and for always having the willingness to share these life experiences. By the time you read these few sentences bidding you farewell, we will, unfortunately, be slightly more distant from each other, but I hope it is a case of only physical distance. Not all that much distance, as to impede the memory of you that I take away with me, and, the memory of me that I hope you will want to keep with you. Those of you who know me a bit better know how lucky and privileged I have always considered myself. Starting with my three wonderful ladies who have had the patience to put up with me on our long family trip, up to the privilege of meeting, in my personal and professional life, many people who were able to give me love and affection. Some of you then went on to become true teachers and examples of life for me. Many of you were people with whom I shared parts of my life before then having to say goodbye. It was exactly this travelling together and then parting of ways, that was, perhaps, one of my characteristics that sometimes made me lovable, but at other times, was viewed as being a bit selfish and superficial on my part. I’d like to take this opportunity to apologise to those of you who were hurt by this side of my personality. I’d like to assure you that if this did happen, it never did for personal gain. I hope you believe me. I was saying that meeting and getting to know so many great people has defined my world. First in Genoa, where I spent my childhood, then in Rome, as a teenager. I spent a large part of my life in Milan, after which came my American experiences of Boston and Los Angeles, and at the end, Bologna, where I spent my adulthood (!). A lot of change, always fruitful even though it was difficult. I’ll give you an example, not because it’s the most important one but because it has stuck in my mind. In 1994, we left Los Angeles to return to Italy after a year’s sabbatical (a truly beautiful experience for all us Libs). At our great Californian-style farewell party, we’d left in the entrance hall of our house, a book of photographs of the Golden Valley, in which each person could write a message. The sentence I still remember, the one that touched me the most, went something like this: “it has been a very intense year, both personally and professionally, and it so sad to discover that we share so many values and beliefs, and yet we are forced to live so far away and with only few opportunities for true friendship….” This is precisely what I mean, this sense of “closeness-sharing” that I would like to maintain, regardless of the distance between us (supposing that I know what I am talking about now and where we will meet again). I am convinced that you will carry on working towards making the world a slightly better place, and, in your own way, according to your abilities and vocations, will bring about micro- and macro-changes. Don’t think I’m crazy if I tell you that I took these nearly 15 years of “maybe, almost certainly disease” (also including the five years of MGUS) to be a sign of greater responsibility. I made every effort to keep it in mind whilst making my choices. First of all, because I was able to prepare myself and seek (not always with success) the prospect of a different life, a less competitive one, and as much as I could, to better understand and accept the limits and potential that we all have, together with the reality that surrounds us. Certainly in these 15 years I have missed riding my motorbike, playing tennis and being able to travel a bit. And perhaps I stopped myself from choosing a slightly more radical life. But all in all, I really think I have received more than I have given. I’ll end this letter with a request… that you are certainly expecting. When there’s the time and the possibility, I would like a special edition of the Libertrophy to be organised [Editor’s note: the Libertrophy is a weekend party/tournament of fun and games organised by the Liberatis at Alessandro’s family home in Forte dei Marmi, Tuscany, to celebrate Alessandro’s birthday]. What it will have to absolutely be – as it always has been – is a party characterised by high spirits and by the desire to be together, hosted and excellently organised by my three ladies. When all is said and done, since the first Libertrophy in 2004, many of my wishes have come true: Inter has won everything in the world, Berlusconi’s government has fallen twice and I hope this time it’s for good. And I’ll stop here because…… The spirit of communications should be extremely simple given that in previous Libertrophy editions you have amply shown amazing creativity and such an easygoing spirit. I’d like to ask you not to waste money on announcements but to put it to better use through donations.

I raise my clenched fist in salutation, Alessandro