'Management team'

The management board
PatientView has a premier management team. Alexandra Wyke, formerly of The Economist Group, is the founder and Managing Director. Clive Nead, experienced editor of business publications, is Editorial Director.

Alexandra Wyke (founder and Managing Director)
Between 1996 and April 2000, Alexandra Wyke was responsible for creating and running a successful International healthcare publishing unit at the Economist Intelligence Unit. Between 1983 and 1996, Dr Wyke was the business and science correspondent for The Economist. Aside from her work in The Economist, her other publications include: articles in the Harvard Business Review, the Daily Telegraph, The Economist's The World in 19..; a chapter in Going Digital, and a business report on motivating managers, published by The Economist Group. In 1997, her book, 21st-Century Miracle Medicine, was published by Plenum (see Amazon.com). Dr Wyke frequently lectures and chairs healthcare forums worldwide. She has consulted for stockbrokers, pharmaceutical firms and other organisations. She has worked for television and radio, appearing in an expert capacity in many programmes. In 1996, she was elected by the BBC to participate in a small team, which assessed the corporation's radio and TV coverage of technology. Alexandra Wyke sits on the advisory boards of INSEAD's healthcare initiative, of Avon's Global Woman's Health and Wellness initiative, and of the European Medical Network. Alexandra Wyke has a PhD in biochemistry.

Clive Nead (Editorial Director)
Clive Nead has over a decade of experience as an editor of business publications. He has built up a large portfolio of work for a number of companies, including Shire Hall Communications (now part of WPP), the Economist Intelligence Unit, Illuminations (Channel 4), and SmithKlineBeecham. In addition, he has written three websites and produced promotional material for various websites, including ComMedica, which is part-owned by Imperial College. His university background was in modern history.

Andrew Banner (Database Manager and Designer)
Andrew Banner is responsible for designing and running the PatientView database of 120,000 patient groups worldwide.

Louise Oatham (Researcher)
Louise Oatham is responsible for researching details about patient groups worldwide.

'Relationships'

PatientView has conducted projects with the following organisations and companies:

Biotech companies
Abraxis BioScience
Amgen

Clinical trials experts
Database of Uncertainties  About the Effects of Treatments (DUETs)
European Forum for Good Clinical Practice (EFGCP)
James Lind Alliance (JLA)
Medical Research Council (MRC)
UK Clinical Research Collaboration (UKCRC)

European Commission projects
Eurocancercoms
Eurogen
PatientPartner

Government and government-appointed agencies
Department of Health (DoH)
National Audit Office (NAO)
NHS London

Health professional bodies
British HIV Association (BHIVA)
Royal College of General Practitioners (RCGP)
Royal College of Nursing (RCN)

Management consultants
Deloittes
INSEAD
Institute of Directors (IoD)

Media and publishers
Binleys
The Economist Group
European Voice

Patient and civic groups
Active Citizenship Network (ACN)
Genetic Interest Group (GIG)
Irish Patients Association (IPA)
Mental Health Europe (MHE)
National Voices
Patients Association (PA)
Terrence Higgins Trust (THT)
Thinkwell
VSOP (Dutch Genetic Alliance)

Pharma and medical device companies
AstraZeneca (AZ)
Eli Lilly
Johnson & Johnson (J&J)
Merck Sharp & Dohme (MSD)
Novartis
Novo Nordisk
PhRMA
Pfizer
Roche
St Jude Medical

Pollsters
Opinion Health

PR/policy firms
Burson-Marsteller Brussels
College Hill
Hill & Knowlton (H&K)
Ingenda Communications
Sudler & Hennessey
Tonic Life Communications
Zomi Communications

Regulators
Medicines and Healthcare products Regulatory Agency (MHRA)

Think Tanks
Health Consumer Powerhouse (HCP)
Health Equality Europe (HEE)

PatientView was a Partner in the UK Medicines Partnership's October 2003 initiative, 'Ask About Medicines Week'.

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'Speeches'

Alexandra Wyke, speech, “The role and value of patient advocacy groups”, at the 16th annual meeting of the Global Alliance for Medical Education (GAME), ‘Collaboration in Continuing Medical Education’, Munich, June 7th 2011.
Click here to download pdf

Alexandra Wyke, speech, “Patient groups’ perspectives on pharma”, at the Engage 2011 meeting, ‘Patients and industry: Building a Valuable and Legitimate Dialogue’, London, March 30th 2011.
Click here to download pdf

Alexandra Wyke, speech, “The future of healthcare in Europe”, at The Economist conference, ‘Healthcare in Europe: Transforming Policy, Systems and Funding’, Geneva, March 17th 2011.
Click here to download pdf
http://www.healtheconomics.org/conferences/2011/03/17/

Alexandra Wyke, speech, “How patients can get involved in HTA”, at the Biotherapy Development Association (BDA) e.V. Working Group Meeting, ‘Actual Developments in European Regulatory and HTA Management: the Meaning for Oncology in Europe’, Bonn, March 9th 2011.
Click here to download pdf

Alexandra Wyke, panellist and speech, "What do patients want to know?", at the ‘How to Cure the EU Patient Information Gap' seminar, organised by Health Consumer Powerhouse at the European Parliament, Brussels, Belgium, Tuesday January 12 2010. Click here to download pdf

Alexandra Wyke, panelist, "Current public policies affecting cancer drug development", panel discussion to the 'Cancer Drug Development' workshop, organised by Novartis Oncology at the European Health Forum Gastein, Austria, Thursday October 1 2009.

Alexandra Wyke, chair, session 1 of the "Critical regulatory and health-technology success factors to ensure patient access to new oncology products" conference of the Biotherapy Development Association (BDA), Brussels, Belgium, Thursday September 10 2009.

Alexandra Wyke, speech, "New ways of measuring patient perspectives in healthcare systems", to the 'Outcomes in clinical research -- whose responsibility?' meeting, organised jointly by the James Lind Alliance, Social Science Research Unit, Royal College of Nursing, and University of Warwick, held at the University of London, Thursday November 20 2008.

Alexandra Wyke, speech, "Bridging the gaps in thinking between patients with bipolar disorder and their doctors: the results of a new global survey" , to an AstraZeneca-sponsored media event held to coincide with the 21st Congress of the European College of Neuropsychopharmacology (ECNP) , Princesa Sofia Hotel, Barcelona, Spain, Wednesday September 1 2008.

Alexandra Wyke, speech, "Valuing quality of life from a patient perspective", to the Continua Health Alliance EU Policy Working Group, Oracle Headquarters, London, UK, Wednesday May 21 2008.

Alexandra Wyke, speech, "Will progress in technology generate patient satisfaction?", to the 'Innovation and technology: promises and controversies' section, Healthcare 2020 Forum, INSEAD, Fontainebleau, France, Friday June 15 2007.

Alexandra Wyke, speech, "Benefits of patient information: better healthcare", Innovation and Health: Challenges for the Pharmaceutical Industry conference, Ritz Hotel, Lisbon, Portugal, Thursday December 14 2006.

Alexandra Wyke, speech, "Utilising patient compliance strategies for clinical trials", 3rd Annual Forum on Patient Adherence, Compliance and Persistency: Increase Product Utilisation through Improved Patient Communication Strategies, Holiday Inn, Chaussee de Charleroi, Brussels, Belgium, Tuesday October 24 2006.

Alexandra Wyke, speech, "Healthcare information for patients and the public: health campaigners' latest views on the subject", European Health Forum Gastein 2006, Bad Hofgastein, Austria, Wednesday October 4 2006.

Alexandra Wyke, speech, "Understanding patient communication regulation across Europe: what can pharma companies do in terms of patient communication?", 3rd Annual Patient Compliance Conference Europe, Amsterdam Marriott Hotel, Amsterdam, the Netherlands, Thursday June 1 2006.

Alexandra Wyke, "Patient perceptions of electronic medical records: a global survey", speech, World Health Care Innovation and Technology Congress: 'Innovation to Transform', Marriott Wardman Park Hotel, Washington DC, USA, Wednesday November 9 2005.

Alexandra Wyke, "New models for engaging patients: usurping public-private partnerships (PPPs)", speech, Center for Business Intelligence's 2nd Annual Patient Compliance, Persistency and Disease Management Conference, Radisson Hotel, Amsterdam, the Netherlands, Monday September 19 2005.
Click here to download pdf

Alexandra Wyke, Congress Advisory Board, European Health Care Congress: Best practices for improved delivery and solutions, Les Fontaines Conference Centre, Paris, France, Monday April 11 - Tuesday April 12 2005.

Alexandra Wyke, chair, "Patients' Rights in Europe: A Citizens' Report-Monitoring the European Charter of Patients' Rights", Active Citizenship Network (ACN), Paul Henry Spaak Building, European Parliament, Brussels, Belgium, Monday, February 28 2005.

Alexandra Wyke, "Cancer patients and their rights to information in the EU", speech, 1st Summit of Cancer Patients Advocacy Groups in Central and Eastern Europe: 'Can Patients Cure a Healthcare System?', Sofitel Victoria Hotel, Warsaw, Poland, Saturday, November 27 2004.

Alexandra Wyke, "Engaging the family in healthcare: Using e-technologies to interact with patients and the public (the results of a global survey by Health and Social Campaigners' Network, September 2004)", speech, eHealth 2004 Clinical Information Systems and Electronic Records Conference, London West Convention Centre, London, UK, Thursday, September 30 2004.

Alexandra Wyke,"Spreading the word: how health campaigners can disseminate key ideas to a wider audience", speech, Mental Health Europe European Seminar: 'Harassment and Discrimination Faced by People with a Pychosocial Disability in Health Services', Brussels, Belgium, April 23 2004.

Alexandra Wyke, "What drug information do patients want? UK and European issues", speech, Centre for Health Information Quality Conference: 'Better Information, Better Communication in Healthcare', London, UK, February 4 2004.

Alexandra Wyke, "The patient's view and ethical considerations of medical technology", speech, International Workshop: 'New Generation of Wearable Systems for Health', University of Pisa, Italy, December 13 2003.

Alexandra Wyke, "Patient information on prescription medicine: a global perspective", Barcelona, Spain, June 27 2003.

Alexandra Wyke, "Summary of the meeting", speech, Health Coalition Initiative/Long term Medical Conditions Alliance/Gamian Europe/PatientView/IBM Workshop Seminar: 'Patient Information, European Directives - the Meaning for UK Patients and Patient Groups', London, UK, May 12 2003.

Alexandra Wyke, "Why do patients want more prescription information?", speech, 5th Annual Direct-to-Consumer Pharmaceutical Marketing and Communication Forum, Warwickshire, UK, April 3 2003.

Alexandra Wyke, panel member, "Healthcare systems of the future", 2nd Global Medical Forum, Zurich, Switzerland, March 24 2003.

Alexandra Wyke, "Patient perspective on information", speech, Journalists' Seminar, The Vienna Educational Symposium on Cancer Anaemia Management, Vienna, Austria, March 20 2003.

Alexandra Wyke, "The priorities for patients in Europe", speech, 15th Annual Drug Information Association (DIA) EuroMeeting, Rome, Italy, March 7 2003.

Alexandra Wyke, "Should pharmaceutical companies supply the public with more prescription drug information? The views of EU-based patient groups", speech, The Future Patient Conference, Brussels, Belgium, November 15 2002.

Alexandra Wyke, "Should pharmaceutical companies supply the public with more prescription drug information? The views of EU-based patient groups", speech, Journalists' Seminar, Brussels, Belgium, October 10 2002.

Alexandra Wyke, "Should pharmaceutical companies supply the public with more prescription drug information?", speech, e-healthcare conference, Zurich, Switzerland, October 4 2002.

Alexandra Wyke, "Understanding the effects of direct-to-consumer prescription drug advertising", speech, 21st International Federation of Pharmaceutical Manufacturers Associations (IFPMA) Assembly, Berlin, Germany, October 1 2002.

Alexandra Wyke, "Should pharmaceutical companies supply the public with more prescription drug information? The views of EU-based patient groups - a collaborative project between IAPO and PatientView", speech, Special Session, European Health Forum Gastein, Bad Hofgastein, Austria, September 26 2002.

Alexandra Wyke, "Should direct-to-consumer prescription drug advertising be allowed?", speech, 5th Pharmacological Conference, Foundation for Scientific Culture, Erice, Sicily, May 12 2002.

Alexandra Wyke, "The e-health consumer and the pharmaceutical industry", speech, e-healthcare consumer forum, INSEAD, Fontainebleau, France, June 9 2000.

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Code of Ethics

The following information about PatientView is intended to ensure that this site is compliant with the document: Commission of the European Communities, eEurope 2002: Quality Criteria for Health-Related Websites, Brussels, November 2002, COM(2002) 667 final, page 6. In addition, this site complies with all relevant European Community law.

Transparency and honesty
Transparency of provider of site, including name, physical address and electronic address of the person and organisation responsible for the site:
PatientView Ltd, Woodhouse Place, Upper Woodhouse, Knighton, Powys, LD7 1NG, Wales; company number 3944382; trading since June 2000. Electronic address of PatientView - info@patient-view.com. Company officer maintaining overall responsibility for PatientView - Dr Alexandra Wyke, Managing Director. Company officer maintaining overall responsibility for PatientView Website - Clive Nead, Editorial Director.

Transparency of purpose and objective of site:
PatientView, is a pioneering, UK-based, research and publishing organisation. PatientView designs and conducts projects that focus on healthcare issues. The aim is to provide patients and patient groups with the information necessary to permit greater choice and obtain improved care, as well as equip healthcare markets with tools to improve patient care. Bringing together sometimes disparate groups to achieve consensus on particular subjects is seen by PatientView as an especially important part of its mission. PatientView projects pay scrupulous attention to accuracy, detail and honesty. PatientView is held accountable, not only by its shareholders, but also by its advisory board, which includes senior academics. In addition, PatientView has an open-door policy with its patient-group project partners, who oversee the output of PatientView's work throughout its development.

The purpose of the PatientView Website is to communicate, in a simple and brief manner, the range of PatientView products and services, and to give patients and patient groups an impression of the healthcare-related subjects analysed in PatientView projects. All new projects are given an entry on the site soon after they have been completed (or, in some cases, before they are completed). Most PatientView projects are widely disseminated via popular or specialist press. Throughout the site, details can be found of instances in which PatientView projects have been reported in the press or on Websites.

Target audience clearly defined:
NHS and other countries' national healthcare organisations; other healthcare providers; physicians; nurses; pharmacists; national and intra-national regulators; the media; industry (pharmaceutical companies, medical device manufacturers, insurers, public relations companies and consultants); and, especially, patients and patient advocacy groups. All of these categories of audience find information of use to them from PatientView projects.

Transparency of all sources of funding for site (grants, sponsors, advertisers, non-profit, voluntary assistance):
The PatientView site is entirely self-funded from PatientView's own resources.

PatientView itself earns revenue through sales of reports, through sponsorship of projects and through the occasional grant. PatientView ensures its independence and impartiality by accepting projects from a wide range of healthcare stakeholders. PatientView was initially subsidised through private seed-corn funds. None of PatientView's shareholders come from the pharmaceutical industry. PatientView's founder, Dr Alexandra Wyke, was employed for 20 years as journalist and then managing editor by The Economist Group - a publishing organisation with strict codes of conduct.

PatientView has adopted a similar code of ethics, and has developed its own conflict-of-interest statement. The statement declares that no project can be funded by industry if vested interests interfere with the project's outcome. The financial backers of PatientView projects are made public from the outset. Where the PatientView Website makes no mention of the sources of funding for any particular PatientView project, that project will have been funded from PatientView's own resources (for example, PatientView's second HIV project, conducted January-March 2002 in conjunction with the British HIV Association and the Terrence Higgins Trust, received no sponsorship at all, and was therefore funded by PatientView alone).

Advertising on site
The PatientView website is an informational resource only, and does not carry any form of advertising.

Authority
Clear statement of sources for all information provided and date of source, plus name and credentials of all human/institutional providers of information put up on the site, including dates at which credentials were received:
This section of quality criteria applies less to the PatientView site than to other Websites because the PatientView site is not so much an informational provider per se - it is more a window on PatientView projects, activities and ethos. The information generated from PatientView projects is published in the form of reports, and is mainly own-source, proprietory, primary data. Where information from another source not PatientView's own is used in PatientView publications, clear attribution is given (an example on the PatientView Website would be the structure of this list of quality criteria: as mentioned above, it is based on the European Commission's eEurope 2002 communication 667). The dates of PatientView projects and publications are listed in the appropriate places on the PatientView Website and in the publications themselves.

Privacy and data protection
Privacy and data protection policy and system for the processing of personal data, including processing invisible to users, to be clearly defined in accordance with Community Data Protection legislation:
Since conception in 2000, PatientView has been registered with the UK Data Protection Commissioner to handle data. PatientView itself holds information that would be subject to data protection legislation (mainly respondent opinions generated from PatientView projects). This information is either held on a small number of password-protected, proprietory computers linked by cabling (not by wireless connectivity), or in paper format - both types of data securely maintained at the main PatientView registered office. No respondent's opinions are ever published in an attributed form in PatientView reports (all are published anonymously and in aggregate), except when respondents give their express permission for their comments to be attributed. The PatientView Website generally contains only outline details of PatientView projects, publications and services, and therefore carries very little personal data, beyond brief biographical facts about PatientView officers and advisory board members. PatientView does not collect information on any of the browsers of its Website.

Updating of information
Clear and regular updating of the site, with date of up-to-date clearly displayed for each page and/or item, as relevant. Regular checking of relevance of information:
The entire PatientView Website is updated on a quarterly basis by the PatientView editorial director. Individual pages are generally not updated between quarterly updates, except when a new project comes onstream or the information contained in a particular page needs to be changed. The date of last update of the site is contained on the home page.

Accountability
Accountability - user feedback, and appropriate oversight responsibility (such as a named quality compliance officer for the site):
Users of the PatientView Website can report their opinions to PatientView by post, telephone, fax or email. PatientView address details are contained on the site's home page. The final page of the site is a 'Contact us' form, allowing site visitors easy email access to PatientView's electronic address. The PatientView site's home page also notes that the named quality compliance officer for the site is the PatientView editorial director.

Responsible partnering - all efforts should be made to ensure that partnering or linking to other websites is undertaken only with trustworthy individuals and organisations who themselves comply with relevant codes of good practice:
PatientView has formed a number of relationships with responsible organisations (to see ‘Relationships’, Click Here).

The heterogeneity of campaigning group partners of PatientView makes these organisations difficult to define. But for the purposes of PatientView, suitable campaigning group partners must meet the following definition:
"The term 'patient group' fails to describe the members of the current grassroots-inspired health movement. Today's healthcare pressure groups embrace not just patients, but families and carers as well, and sometimes even individuals who are close to, and know, patients. People with a disability and older people maintain a similar interest in the condition of healthcare systems, and numerous groups exist to represent the interests of these individuals. Gender-based organisations specialising in male or female-oriented health issues are also prevalent worldwide. The healthcare lobby even includes healthy people who promote concepts of wellness. In fact, half of all health-focused NGOs claim some interest in disease prevention. Others still are interested in promoting alternatives to modern medical approaches. A better phrase to describe the members of the present-day user-driven healthcare revolution than 'patient', therefore, is 'health campaigner'. A health campaigning organisation is any group that claims to represent the interests of patients or the public in matters of health or healthcare. Such groups are led by the users of healthcare systems--not health professionals or staff from different categories of stakeholders. The definition should be seen as incorporating statutory bodies appointed by government or healthcare providers, to speak up for and defend the interests of people using healthcare systems." [A. Wyke, 'Consumer-driven healthcare has arrived, and will transform pharma markets', Scrip, April 2006.]

Editorial policy - clear statement describing what procedure was used for selection of content:
PatientView is an independent organisation. PatientView is transparent, and publishes the results of its findings. All editorial content of PatientView publications and the PatientView Website remains under the sole control of PatientView (with the exception that current patient group partners are given the opportunity to dictate factual changes of content to PatientView reports being readied for publication). Material placed on the PatientView Website is chosen by the PatientView managing and editorial directors solely to give information about PatientView publications and projects. Other organisations are mentioned on the site only insofar as they have provided aid in conducting projects (partners), have reported PatientView projects or publications (the media and others), have sponsored or given grants to projects (sponsors), or have maintained some form of intellectual relationship with PatientView. If any publicity accrues to any organisation (other than PatientView) as a consequence of material placed on the PatientView site, such a result is accidental and entirely unintended by PatientView.

Accessibility
Accessibility - attention to guidelines on physical accessibility as well as general findability, searchability, usability, etc:
The PatientView site is a relatively simple creation. It is designed in a fairly straightforward fashion, to minimise the necessity for users to scroll extensively. The site's buttons and pages number less than those on many other sites. Navigation is uncomplicated and often linear. While links to other related sites do exist on the PatientView Website, PatientView is inevitably unable to vouch for the general usability of those sites. Access to the PatientView Website itself is possible either directly, or through most major search engines.

Links to blogs and other tools
The PatientView website’s home page contains a direct link to Twitter.com, and to a PatientView section of Posterous.com, entitled ‘PatientView alerts and updates’. The latter carries mainly short articles about PatientView publications, and PatientView-related publications and events, and is written by PatientView CEO, Dr Alexandra Wyke. ‘PatientView alerts and updates’ on Posterous.com carries a link to another PatientView blog hosted on another website: Patients’ Pages, a cross-stakeholder discussion group on Linkedin.com. Patients’ Pages is open to the comments of any interested individual. Discussion topics centre around issues of relevance to patients. The founder of Patients’ Pages is PatientView CEO, Dr Alexandra Wyke. Dr Wyke acts as a volunteer moderator to the discussion group and to ‘PatientView alerts and updates’. She has no capacity to edit or adapt the contributions of individuals who place comments on either the discussion group or on ‘PatientView alerts and updates’, but she can remove any inappropriate contributors from each medium.

To reflect the presence of blog access on the PatientView website, we have incorporated below the HONcode ‘Template for Blog Moderation’ (which is, itself, based on the HONcode ‘Certification for Collaborative Websites’), and have adapted it accordingly to fit the PatientView circumstances:

Authority
The two PatientView blog-like tools (‘PatientView alerts and updates’ on Posterous.com, and ‘Patients’ Pages’ on Linkedin.com) are moderated occasionally and posteriorly. The moderator, Dr Alexandra Wyke, operates in a volunteer capacity. Internet users posting comments on these two blog-like tools should not be considered as health professionals.

Complementarity
Comments posted on the two blog-like tools should be designed to support, not replace, the relationship that exists between a site visitor (whether a patient or not) and their physician/s.

Confidentiality
Comments posted on the two blog-like tools can be widely read, and used by readers in any manner they deem ethical. Commentators do not have the possibility to erase their own comments.

Comments
Commentators to the two blog-like tools are expected to write with respect and honesty at all times, and to only post information which they believe to be true and correct (supporting references, links, etc may be submitted).
Such users/commentators should also not post any commercial or advertising comment.
The volunteer moderator reserves the right to erase, without notification, any comment judged inappropriate.

Last modification date of this ‘PatientView version of the HONcode Template for Blog Moderation’: February 2011.

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