Speaker's name: CLAUDIA DI LORETO
Special Symposium title: PATIENT SYMPOSIUM
Lecture title: PATIENT ADVOCACY: STRATEGIES FOR A SUCCESSFUL PARTNERSHIP
Abstract title: PATIENT ADVOCACY: STRATEGIES FOR A SUCCESSFUL PARTNERSHIP
Authors: CLAUDIA DI LORETO
Authors' affiliation: Aimac Associazione Italiana Malati di cancro, parenti e amici – piazza Barberini 47 – 00187 Rome, Italy;

PATIENT ADVOCACY : STRATEGIES FOR A SUCCESSFUL PARTNERSHIP
Claudia Di Loreto
Aimac Associazione Italiana Malati di cancro, parenti e amici – piazza Barberini 47 – 00187 Rome, Italy

In 1995 Francesco De Lorenzo, a university professor of biochemistry and a former health minister, was diagnosed with colorectal cancer. His treatment plan would include surgery and chemotherapy. He decided to be operated in Italy and then to have his chemotherapy in England under the supervision of Maurice Slevin, oncologist, chairman of CancerBACUP, the largest European cancer organization, who showed him that information and psychological support can have an impact on a patient’s response to cancer treatment. Actually his psychological condition was so poor that, in his oncologist’s opinion, chemotherapy could have been less effective. Even though he has a medical background, De Lorenzo ignored what effects chemotherapy would have and was asking a lot of questions. CancerBACUP booklets were very helpful to him.
De Lorenzo was enthused over the idea of founding an organization that could provide information and psychological support to cancer patients and their families and friends in order to help them overcome the ordeal of the disease.

So when he returned to Italy he pooled a group of friends including cancer patients and survivors, non-patients and professionals and talked them into becoming the founder members of a new non-profit making association whose aim would be to provide information and psychological support to cancer patients and their families. In 1997 Aimac was officially established. The newborn cancer organization would fill a gap, since at that time information was still underestimated in Italy, while much was being accomplished in the fields of research and prevention. Those professionals are still members of the Scientific Committee, the ‘validating’ body.
Aimac would not have been established without the collaboration of CancerBACUP, that, beyond their expertise and know-how, granted also the permission to translate their booklets and adapt them to the Italian background. CancerBACUP’s material stems by a panel of cancer specialists and nurses and above all cancer patients/survivors and provides scientifically-based information in a simple language. Likewise, all Aimac publications are revised by a panel of cancer specialists  and cancer patients/survivors: this ensures that the information provided is adapted to the Italian background and always up-to-date, and that also practical advices are given.
The first six booklets of the Sunflower Collection were issued in 1997. They were Lost for words, Chemotherapy, Radiotherapy, Cancer of the colon-rectum, Cancer of the breast and Cancer of the cervix. Cancer patients could have them for free upon request.
In 1998 the website went online. At that time Italy was lagging far behind as far as the use of the web as an information source was concerned, and the number of existing websites and web users was rather limited. That was a pioneering effort for a volunteer-based organization but time has proved that the Board was far-sighted.
This first version of the website was very simple. Website surfing and e-mail queries are closely related; however, for the first year the number of e-mails was still very low – an average of 16 a month. The helpline was still the most used means that patients and above all their relatives used to ask for information, especially over the phone.
The queries that were received proved that there was indeed a strong need for information but it was not easy to circulate the booklets and to increase the number of web hits. A major difficulty was the high cost of the whole printing process that forced the Board to limit the circulation of the booklets. Combined with the fact that oncologists were unused to information tools, it was very hard to get the booklets into the major cancer centers, where users would have had easy access to them. The only way to let the general public know that a cancer information service was available was to try and be invited to radio and television talk shows on the subject. Indeed, every time Aimac’s delegates went on the air, the helpline would record high peaks, which would remain unchanged for a couple of days before decreasing slowly to low levels.
Still in 1998 the first videotape on chemo-and radiotherapy was produced together with Robert Thomas, head of the oncology department at Addenbroke’s Hospital, Cambridge. Once again, the British experience set the example. Thomas had already used the original English version of the tape with his patients and had observed that when the patient was informed, he/she would response better to treatment and this, in turn, would reduce treatment-related anxiety. With the support of the Italian Embassy in London and Banca di Roma, an Italian version of the tape was produced and circulated in England. When Aimac Scientific Committee viewed the tape, soon got in touch with Thomas to ask him to collaborate on the production of a new videotape. The ‘trick’ was that cancer patients explained other cancer patients how they had felt before, during and after treatment and this turned out to be more effective than any doctor’s explanations. The new Italian version had new dubbing and new soundtrack by Peppino di Capri, a very popular Neapolitan singer, and was introduced by Mara Venier, one of the most famous TV presenters. Information via videotapes was another pioneering effort: the use of this medium was new and the fact that few households had a VCR and hospitals did not have a TV and VCR available for in-patients would have been discouraging for everyone but not for Aimac. Like the booklets, also the videotape was sent to cancer patients for free.
In the meantime other booklets had been produced including Cancer of the lung, Cancer of the prostate, Melanoma, Sexuality and cancer, The right to know and Feeling better.

Another important event in Aimac’s development is the 2nd World Conference for Cancer Organizations that took place in Atlanta, USA, in 1999. Aimac had already invested a lot of resources to build up national and international relations with other cancer associations. Prof. De Lorenzo had already met with the representatives of leading organizations in Heidelberg, Germany, in 1997, but this overseas trip gave the opportunity to exchange ideas with everyone in the cancer information world. Furthermore, on the way to Atlanta, the New York office of the Cancer Information Service from the National Cancer Institute was visited: the advanced state of development of this information service was astonishing and puzzling at the same time: will it ever have been possible to achieve anything like that in Italy? The abundance of information tools was really a dream for a small volunteer-based organization like Aimac. Then also the meetings with some people from the Memorial-Sloan Kettering Cancer Center and with CIS managers in Bethesda were very valuable. A sound cooperation network had been established. Any time an Italian-speaking patient with a rare form of cancer required information Aimac knew how to get it in a very short time.
The only non-CancerBACUP booklet that has been translated so far is NCI’s Melanoma.
On a European level, Aimac had meanwhile become member of ECL, the association of European Cancer Leagues, on which was the only Italian representative together with the National League against Cancer that is not a NGO. This meant close cooperation with Germany, France and Belgium. Even UICC was joined, which gave Aimac further accreditation.

Aimac was also being invited to numerous conferences and workshops worldwide, which would give its representatives the opportunity of meeting with colleagues from other organizations and show them how a small group of very determined, far-sighted and passionate volunteers could do miracles.
In Italy, Aimac’s activity was little by little gaining recognition from the oncology milieu: through participation in the conferences of the Italian Association of Clinical Oncology (AIOM) both as exhibitioner and presenter, oncologists were becoming familiar with the information material. At the same time, they were becoming more aware of the importance of information for their patients. A key relation was estabilished with CRO, Aviano Cancer Center: the consequence was that the Sunflower Collection would be on display in the library and available to patients and their relatives and also that the institute’s experts would help with replying to the most difficult queries.
In 1999 the Sunflower Collection was expanded to include 16 titles (the most recent publications were Diet and the cancer patients, Hair loss, Advanced cancer, Hodgkin’s lymphoma and Non Hodgkin’s lymphomas). Even the number of e-mail queries was growing, having reached an average of 31 per month.
Aimac realized that cancer patients needed not only information on the disease and its treatment but also information on which cancer center would be most specialized and updated in the treatment of a given form of cancer or where a certain diagnostic procedure would be available or who can help a patient living alone or whose relatives do not have time or money to take care of. In order to answer all these questions, surveys were made of all cancer centers in Italy and of local and national volunteer-based organizations. In the former case, a great help was given by AIOM, that provided the basic data, which had to be updated. The latter survey was made from scratch and took a lot of time. When it was finished, it was the first directory of volunteer-based cancer and non-cancer organizations on local and regional levels. 

Other booklets were published (Cancer of the ovary, Cancer of the stomach, What do I tell the children?), bringing the Sunflower Collection to a total of 21 titles.
In 2001 Prof. De Lorenzo resigned his post as president and was substituted by Prof. Umberto Tirelli, a renowned scientist and oncologist, not a cancer patient. In the Board’s opinion, this nomination would bring Aimac closer to the oncologists and encourage the use of the Sunflower Collection by his colleagues. Furthermore it would also show clearly that the oncologists’ attitud towards patients’ organization and the information they give was changing.
The helpline was getting busier and busier: e-mails alone rose to a monthly average of 64.
Taking advantage of the annual conference of ECL being held in Rome in September 2000, which would be attended by a highly qualified audience, Aimac thought the time had come to draw the attention of Italian insiders and media on the role of information tools for cancer patients. A meeting on The role of information tools…. took place in Ischia: over 60 selected people from all over the world attended. Among them …. .
Indeed, one of the most important achievements of the Tirelli presidency was the collaboration with AIOM in the first study ever carried out in Italy on the effectiveness and usefulness of information tools for cancer patients. The idea that a good communication was one of cancer patients’ top priorities since it decreased anxiety, drug usage and post-surgery complications was being accepted by oncologists. In Italy it was mandatory for doctors to get their patients involved in the decision-making process but some doctors still believed that if the patient was fully aware, depression would take over. Further the patient’s relatives often did not want their beloved to be fully informed. Hence, the doctor-patient communication was still lacking. This is why Aimac’s Board was convinced that a randomized, multi-center trial would be very helpful to evaluate how patients rated the information received by the oncologists and also how effective and useful the booklets and videotape were.
AIOM selected 30 centers that were willing and interested in participating and the oncologists who would be in charge of the study. Aimac drew up all questionnaires and would also be in charge of data evaluation. The study actually began in May 2001.
In October 2001 Aimac’s activity in favour of Italian-speaking cancer patients worldwide was awarded the 25th CIS Anniversary Award for International Cooperation by the American National Cancer Institute. Unfortunately, the dreadful international events going on at that time prevented the Italian representatives from attending the prize award ceremony.

In 2001 only one new booklet was published (Cancer of the brain).
The amount of information material was becoming larger and larger. The development in communication technology had made the website obsolete and even though no sponsor could be found, the Board decided that a new website had to be designed, which would be more user-friendly and graphically alluring.
After long discussions with the web designers due to the fact that their viewpoint was rated as ‘too aggressive’ by Aimac’s members, the new website was launched in February 2000. A clear distinction between a cancer information area and a practical information section, easy navigation bars, light blue-based graphics and a more general sober approach made the website more charming. The contemporary participation in numerous TV shows and a media campaign increased sharply the number of hits and e-mails, which reached the average of 12,815 and 38 a month, respectively. Unfortunately, the website traffic in 1998 and 1999 had not been monitored and there were no statistical data with which it could be compared. But the perception was that it was changing.
The cancer information section provided the whole texts of the booklets, which were by now 22 (a new text on cancer of the brain had been released in the meantime), and also of the drug and DST factsheets. The former are again taken from CancerBACUP’s production and give information on individual chemotherapy drugs, hormonal therapy, monoclonal antibodies and combination chemotherapy; the latter are translated from NCI’s famous PDQs.
In 2002 the booklet production slowed down a little bit and only two titles were released (Cancer of the liver, Liver resection).
In May 2002, Tirelli signed an agreement with the Italian Federation of General Practitioners, a trade union which counts over 25,000 members. This would open up another distribution channel for the booklets and video that Aimac produced.

In May 2002 the above study was concluded. A total of 328 consecutive cancer patients were enrolled by 21 centers. All patients were about to receive their first chemotherapy. The questionnaires they were asked to fill in questionnaires regarded the perceived quality of information, level of psychological distress, perceived severity and curability of the disease, and quality of life. The results were evaluated by means of statistical analyses and showed that 86/93% of the patients considered the booklets ‘very useful-useful’. The videotape was regarded as ‘quite’ or ‘much’ more complete than the booklets (87%). According to 81/87% of the patients, the information that had been given had improved their knowledge of the disease/chemotherapy ‘a lot-enough’. The author concluded that the information the patients receive by the oncologist is the best, as long as they are devoted enough time. Booklets-videotapes can partially overcome the lack of oral information by medical doctors. A better informed patient helps the oncologist save time. The study would be published as an original article on Annals of Oncology in May 2004 (1).
In 2002 only one new booklet was produced on pain treatment but other drug and DST Factsheets were translated bringing their total to 80 and 50, respectively.
Within the framework of a governmental program called Servizio Civile that allows young people between 18 and 26 years of age, regardless of their background, to work for 12 months by volunteer-based organizations and get paid by the Government, with a self-explaining considerable advantage for the NGOs, Aimac could enhance the inhouse helpline and open up some information points by four major cancer centers. Each center would be manned by two psychologists for 12 months. This was a terrific opportunity to bring the booklets inside the hospitals.
A joint support program for breast cancer patients was launched in 2002 with Policlinico Gemelli in Rome. The cooperation with the department of psycho-oncology of this important hospital was the start of the inhouse psychological support service, that had been impossible to begin before. Since then, a support group has been formed, that meets on a weekly basis. 

In early 2003, a new presidency took over: Ciro Paglia, a journalist and again a cancer survivor.
In June 2003 the first issue of AMICAimac came out. This newsletter should be available three times a year; it reports medical news including treatment developments, controversial issues and other cancer-related themes; letters from patients and carers; regular updates on Aimac’s work; information on fundraising events. The second issue was published in December; with both issues a total of 45,000 copies were distributed.
In the same year Aimac strengthened its role as a lobbyist for cancer patients and their rights and obtained recognition by the Ministry of Welfare for a chronic cancer patient to take his/her full-time position to a part-time post and be restored to the previous full-time job when treatment is finished. This was the first time that a ministry would heed the request of a volunteer-based association: this important change was included in the White Paper on the labor market reform that had been drafted by Marco Biagi.
In July 2003 the twenty-sixth booklet of the Sunflower Collection come out (Cancer of the kidney).
In an attempt to gain further institutional recognition, Aimac managed to get collaboration from the National Institute of Social Medicine (IIMS) to make a new nationwide survey of volunteer-based cancer organizations. The ultimate goal would be the publication of a directory of cancer services. The survey was not easy because small organizations are known only on a local level and they open and close activity continuously. However, the preliminary results were presented in November: 480 local-based organizations were included. On the same occasion, before a numerous audience and TV journalists, based on the idea that ‘the more we are, the stronger we are’, F.A.V.O., the Italian federation of volunteer-based organizations, was established. Francesco De Lorenzo was  elected as coordinator.
This meeting gave also the opportunity of presenting the new version of The right to know: the booklet had been completely revised and updated to become a practical guide for cancer patients and their relatives to help them protect their rights, which are too often neglected. Hence, the Editorial Committee thought that it would be more appropriate to change the title, which is now The rights of cancer patients. This is focused more closely on Aimac’s number-one lobbying activity.
The support of a giant of the computer industry, Hewlett Packard, was very helpful to equip 6 information points and the main office with new, state-of-the-art computers and printers. Even though considerable progress has been made, computers are not yet so widespread in Italy (there are surely more cell phones than computers) and most people still connect to the web from their offices. Hence, this would make it easier for inpatients and visitors to get the information they need and learn how to surf the web.

The website and e-mail traffic for 2003 scored a monthly average of 19,427 and 45, respectively.
In early 2004 Aimac was admitted as associate member in the network of cancer institutes founded by the Italian Ministry of Health in 2002. The only other member is the National League against Cancer. This meant for Aimac the beginning of a close cooperation with the National Cancer Institute in Milan that would be characterized by a mutual exchange of information tools.
In May 2004, the Members’ Assembly elected Francesco De Lorenzo to second term as president.
It finally seems that the attitude towards cancer information and the role it can have beside research, prenvention and treatment. In this respect, Aimac has launched the information is the first medication communication campaign, that came out throughout the summer on the major newspapers. A TV spot is supposed to be released soon.
Within the framework of its lobbying activity, Aimac has also been successful in getting the Ministry of Health fund a rehabilitation project, which would be carried out jointly by F.A.V.O., National Institute of Health (ISS) and some major cancer centers (among them Milan and Pavia). One million euro will be spent on this project, a huge amount for volunteer-based organizations.
Important cooperations have been established with other medical associations, namely the Italian Society of Psycho-Oncology (SIPO) and the Italian Association of Oncological Radiotherapy (AIRO). SIPO, through its experts, has made a major contribution to revise and update the Sexuality and cancer booklet, AIRO is involved with the videotape revision process together with the staff of the Oncology Department of Fatebenefratelli General Hospital (Rome), which is responsible for the chemotherapy section.

Furthermore, within the framework of an institutional cooperation between the Italian and the American governments, thanks to the cooperation with the NCI-CIS Aimac is going to be a partner in an international project involving clinical trials and complementary therapies. These issues are burning, since information on clinical trials are lacking in Italy and in Europe in general and complementary therapies are becoming more important in the management of cancer patients.
Nowadays www.aimac.it is the reference point for Italian-speaking cancer patients worldwide. The figures for the first nine months of 2004 are as follows: 399,610 visitors, of which 86% from Italy and 14% from other countries, with a monthly average of 25,000 (in May 38,033 hits were recorded, with a 56% increase as compared to previous months; this figure is still unparalleled); 1,606,501 page views (booklets 22.21%); the most viewed pages are booklets, DST factsheets, news and drug factsheets. As for queries, most of them come from relatives (413 vs. 257 from patients) and regard medical advice (30.63%), cancer centers (15.89%) and material orders (13.21%).
In October the final results of the above-mentioned survery of volunteer-based cancer associations will be presented and a new directory including 560 organizations will be issued. Because of a lack of funds, the production of a cancer service directory has been put off to next year.
Taking again advantage of the above Servizio Civile, starting from January 2005 Aimac will have 16 psychologists to man other information points in cancer centers all over the country and the inhouse helpline.

Aimac’s booklets are now well-known and available by most cancer centers: patients can obtain them through libraries and information points. The winning point is that they use a simple language to outline a scientifically sound content and the fact that patients work side by side with professionals to give information other patients need. It is always helpful to speak to somebody who has already gone through the same experience.
We are very proud of the results we have achieved: it has been hard but our enthusiasm and strong belief in what we do have helped us overcome the numerous difficulties that we have encountered. Our motto is: never give up, you can make it. And the same is true in the fight against cancer.