The Informed Patient Il Paziente Informato. Firenze, 27 Novembre 2003 Report on the Conference

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1 The Informed Patient Il Paziente Informato Firenze, 27 Novembre 2003 Report on the Conference The aim of this conference was to initiate a network of interested parties to promote better provision of information to patients, their families, and the public at large across Italy. This meeting built on earlier work by Cambridge University Health in developing a report, The Informed Patient published in May 2003 and available for download at and raising this issues at launch events in Brussels and London. The conference was organised by Professor Renato Corradetti at the Faculty of Medicine and Surgery at the University of Florence, and sponsored by Fondazione DEI-onlus and Johnson & Johnson, who had also sponsored The Informed Patient study at Cambridge. Summary The conference brought together a wide range of views from across the different stakeholders involved in health information provision from patients and carers groups through the various medical professions and industry to information intermediaries such as the media and librarians, who play an important part in disseminating information or enabling the public to track down the information they need. It was clear that the patient-physician relationship as a channel for communication is critical, but often not meeting the change to a joint decision-making process a change in attitude and habits by clinicians was necessary, and would require support in terms of training and time. Other players had much to add, both in terms of supporting the physician and providing supplementary channels for information, though this needed to be quality information that informed in an unbiased way and helped patients understand their choices. It was clear that this was an issue of growing importance for Italy as well as Europe generally, and that there are a number of initiatives in progress in certain areas, which need to be evaluated and the results shared so that others can adopt them and adapt them to local needs. Detail Prof. Alessandro Mugelli, the Dean of the Medical School, opened the conference and welcomed both speakers and guests. He introduced Prof. Augusto Marinelli, the Rector of the University, who also welcomed all the attendees and emphasised how important they felt this topic was in improving healthcare. Prof. Marinelli was followed by Prof. GianFranco Gensini, Dean of the Medical Faculty. Prof. Gensini noted that chronic care, as opposed to acute care, requires stronger communication between clinician and patient. He hoped that this initiative would act as a catalyst for progress in this arena, which must be continued. He gave an example of how patients who were being treated with hypertensive drugs followed their treatment protocol better if they properly understood what the drugs did and why they should take them.

2 Prof. Mugelli, then introduced the Health Ministry (Assessore per il Diritto alla Salute) for the Tuscany Region, Dr. Enrico Rossi. Dr. Rossi explained how his department carefully monitored public relations, in particular complaints from the public. The vast majority of complaints were not to do with actual treatment, but rather the relationship with the clinician, and that patients were seeking better support and access to the information available. This showed that the critical element is doctors and nurses proving proper information to patients good information leads to good treatment. Doctors were often very good at talking, but not so good at listening, which could lead to problems over their having too little information about the patient it needed to be a two-way communication. Dr. Enrico Desideri, Head of the Careggi Hospital, then spoke, identifying that informed consent was crucial to treatment, and key to proper clinical risk management, and the avoidance of medical errors. It was important to have a multidisciplinary approach, bringing together all parties from insurers to doctors and patients, covering different aspects of care management from safety and quality to technology assessment as well as self-assessment and auditing. Ultimately this would reduce adverse incidents, leading to lower insurance costs and fewer legal claims. The next session was ably chaired by Dr. Michael Rogers, senior member of the European Commission s Group of Policy Advisers who introduced a brief scenesetting: Risk Assessment critically depends on information which is uncertain to a greater or lesser extent. Risk Management decisions often involve Risk-Risk tradeoffs, and the regulatory process is complicated by Risk Perception and Risk Communication. All of this is an everyday experience for medical experts attempting to present information to patients. Peter Singleton, Senior Associate at Cambridge University Health, gave a short outline of their study, the evidence available from the literature and the opinions of European experts that they had convened in six meetings in 2002, and the main conclusions that had come out of this. Their report called for four main actions: - EU-funded European Initiative to construct an EU Framework for the Future developing initiatives to improve healthcare across Europe; - A Web-based Information & Communications Network to explore best avenues for further development, share experience, and capture evidence of best practices; - A Formal Research Agenda to gather new evidence on best practice; - Co-operative Information Campaigns between industry and governments to work together to improve awareness of health issues and risks Dr. Helen Magee of the Picker Institute then gave a review of their work in eliciting the opinions of patients across Europe regarding their healthcare. It was clear that patients generally wanted more involvement in their care, though this was not uniform across Europe, but was clearly a trend that was more progressed in some countries than others. Alistair Newton, Treasurer of the European Federation of Neurological Associations, then discussed matters from the perspective of a patients organisation. The reciprocal respect between the patient and the doctor is the correct basis for the relationship and for reaching concordance in the therapeutic choices. Mr. Newton also illustrated the initiatives promoted by EFNA at European level.

3 Dr. James Copping from the Enterprise Directorate-General of the European Commission spoke concerning the last G10 Communication and its calls for actions for the future. This was to be voted on the following week by the Council of Ministers. There was also to be a vote that day by the European Parliament on the Pharmaceutical Review recommendations. He also mentioned other activities on the EC front, such as the European Health Portal, which was being developed jointly between the Enterprise, Sanco, and InfoSec directorates. Dr. Scott Ratzan of Johnson & Johnson spoke both as a representative of J&J and also as an academic in this field, currently the Editor of the Journal of Health Communication. He mentioned that their research suggested that there were at least four different types of patients (at least with respect to their seeking health information): those that avoided addressing issues of health, those who passively followed their physician s advice; those that interacted actively with their clinicians; and those that sought information independently. He was seeking to develop the concept of the health competent consumer who understood what health was all about. To this end J&J were currently working to start a Centre for Advancing Health Information (though the name was not yet certain) to promote and support activities in Europe in this area. Prof. GianFranco Gensini, Dean of the Medical School, concluded this session with a presentation concerning the difficulties of presenting and interpreting information concerning risk. He introduced the concepts of number needed to treat (NNT) and number needed to harm (NNH) which would determine the number of patients needed to be treated with a new drug or device to show whether the intervention produced noticeable benefits or produced adverse side-effects. This showed how difficult it was to be certain about benefits and adverse risks when talking about new treatments. He also made reference to a paper in the BMJ by Elwyn et al, Doing prescribing: how doctors can be more effective this showed clearly that concordance by patients improves if they understand better what the treatment is for and its consequences, including not taking the treatment. He emphasised the importance of respecting the patient s own preferences, otherwise drugs might be prescribed, collected from pharmacists, but never actually used by the patients wasting time and resources for all concerned. The discussions after this section of the conference raised questions about assuring the quality of the information available; why patients often preferred alternative or complementary treatments; how one dealt with cognitively impaired patients, who might need special formats for communication or where there was difficulty in ascertaining their level of understanding, and how it was important not to be too prescriptive in terms of guidelines. After lunch there followed the round table discussion to consider how this issue affected the Italian healthcare scene. Professor Corradetti opened the discussion with a presentation concerning the structure of the Italian healthcare system. There followed a number of speakers covering how the issues affected their particular profession or organisation:

4 - Dr. Laura D Addio spoke for Italian Nurses Association (ANI) identifying how information should be provided as part of a treatment protocol, and also how in an A&E clinic they provided clear information to patients about how patients were streamed into Emergency, Urgent, Deferrable, and Non-urgent cases, and how this would affect their priority, which helped reduce uncertainty and enabled patients to respond better to their circumstances; - Dr. Venanzio Gizzi spoke for the Pharmacist Association (Assofarm) noting how they help warn of potential side-effects and support pro-active campaigns against smoking and similar problems; - Dr. Alessandra Manassero from Farmindustria spoke about the information supplied by the pharmaceutical industry in terms of Patient Information Leaflets (PILs) and Technical Sheets for doctors, and how the former were now being improved to be more readable she also raised the problem of the media raising public expectations of new medicines; - Donatella Panigada spoke for the Federation of Italian Neurological Associations (FIAN ONLUS) showing that the burden of cerebral diseases in Europe is about 35% of all chronic diseases and illustrating the initiatives to be undertaken in this area by FIAN for the 2004 in Italy; - Dr. Eugenio Pattarino, representing the Ordine dei Medici della Toscana and President of Società Italiana di Medicina Generale (SIMG), a Scientific Society of GPs, felt that Internet information needed to be controlled as a self-informed patient could be at risk through undertaking their own treatment, and that there should be appropriate communication training for new physicians and update classes for practicing doctors as it could be difficult to change habits; - Dr. Franca Porciani from the Italian Newspaper, Corriere della Sera, whose first degree was in medicine, was preparing a paper on their research which showed that 60% of the health information that patients believe is from newspapers, 53% were interested in health and science, but only 18% in politics (though this was not reflected in column inches) physicians need to abandon their position as the major stakeholder in the patient s care; - Dr. Pim de Graaf from the Netherlands Institute for Care & Welfare (NIZW) spoke about their own work in promoting electronic information to patients over the last ten years he said that it was a new medium which was still evolving, information provision must adapt to patient needs which vary over time. The network they had set up in the Netherlands, kennisring knowledge circle, was not just a single web-site, but more of a dynamic library of information with multiple layers, designed to facilitate the exchange of information between providers and patients. He noted that information may increase the demand for care, and that quality of information can have different meanings; - Prof. Antoni Noguero from the Escuela Superior de Relaciones Publicas in Barcelona spoke about the structure of the healthcare sector in Spain and the state of health information provision, noting that the Catalonia region had introduced a new law on advertising of medicines;

5 - Silvia Bruni from the patients association NAUTILUS, spoke, both as a patient and a librarian, of the natural need for information and their initiative Leggere per stare meglio (Read to be healthier) which included provision of an Internet assistant at libraries to help the public find the health information they sought; - Lucia Santoro from the Careggi Hospital spoke of the psychologist s perspective and the issues concerning effective communication between patients (and their carers) and doctors, handling the patient s anxieties, and understanding their need for information to avoid errors in care; There followed some broader discussions where participants noted the need to provide information positively, maintaining a patient s hope for the future, particularly where genetic predisposition to disease was involved, and how the media needed to be cautious in its headline claims about miracle cures. Michael Rogers then closed the meeting with a brief summary, including his own comments on the use of the precautionary principle where even if the precise risks were unknown at least patients could be informed so that they could chose the appropriate precautionary action which met their needs.