Reports on the following subjects are available for download for free

Bipolar Disorder
Cancer
Care Planning
Children's health and healthcare
Clinical research
The role of patient groups in clinical trials in Europe
Counterfeit medicines
Epilepsy
Health advocacy
Healthcare systems
Healthcare technology
Hepatitis B
HIV/AIDS
Hospital-acquired infections
Life sciences industries
Local healthcare commissioning
Medical research and clinical trials
Mental health
Patient-centred care
Patient information
Patients' quality of life
Patients' rights
Prevention
Rheumatoid arthritis
Stroke Care

Bipolar Disorder

• Key Experiences of Bipolar Disorder: an interactive poster on bipolar disorder
A poster has been produced to disseminate the key results of a March-July 2008 worldwide survey of 2,688 people with bipolar disorder. The poster is interactive, allowing the viewer to read its various sections by moving around the surface of the poster with movements of the mouse. When any of the poster’s six interactive boxes are clicked on, a narrator speaks in English about various bipolar-related subjects (including the importance of bipolar disorder; the quality of life of people with bipolar; and awareness issues). The poster was launched at the European Bipolar Forum (EBF), Budapest, Hungary, May 2010.
The patient arm of this global survey of patients and physicians was conducted by PatientView in association with the Leuven, Belgium-based European Federation of Associations of Families of People with Mental Illness (EUFAMI); the Malta-based Global Alliance of Mental Illness Advocacy Networks (GAMIAN)-Europe; and the Woodbridge, Virginia-based World Federation for Mental Health (WFMH).
More information about the survey results and the poster presentation can be found on the following PatientView Posterous update: Click here
The poster itself can be viewed at the following link: Click here

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Cancer

• Understanding the Cancer Patient Movement: Facts, Figures, and Analyses, 60 pages, September 2005 (a PatientView report). For a PDF of the report, Click here

• Information for Patients with Cancer, 92 pages, May 2003, ISBN 1-904394-06-X. For a PDF of the report, Click here

• The Information Needs of Patients with Cancer, 3 pages, CancerFutures, volume 2, issue 1, February 2003 (article for, and published by, CF). http://www.cancerworld.org/CancerWorldAdmin/images/static_modules/images/1428/CF_1_Vol2_33.pdf

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Care Planning

• Planning Care: the Patients’ Perspective
National Voices (an umbrella organisation established in September 2008 by and for the voluntary sector) and the Royal College of Nursing asked PatientView to discover what English patients and their representative organisations understand and think about the UK government’s initiative to ensure that every English patient with a chronic illness has a care plan by 2010.
As part of its research into the subject of care plans, PatientView surveyed between June-July 2009 the expert viewpoints of 430 patient groups in England. Taken together, the respondent groups represent over 1 million patients in England with a diversity of long-term conditions (from mental health or cancer, to heart disease or HIV/AIDS).
The main finding of the survey: the UK government will miss its 2010 target of rolling out care plans to all people in England with a chronic condition.
PDF report for National Voices and the Royal College of Nursing, 20 pages, September 2009.
For the National Voices press release on the survey, please Click here
For PatientView’s report, Planning Care: the Patients' Perspective, please Click here

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Children's health and healthcare

• The Rights of Children to Appropriate Healthcare: A Global Survey. Survey conducted during Summer 2006 on behalf of Professor Manfred Götz, Department of Child and Youth Medicine, Wilhelminenspital, Vienna, Austria. Survey report published December 2006. For a PDF of the report, Click here

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Clinical Research

• Outcomes in Clinical Research - Whose Responsibility?
A PDF report by the James Lind Alliance (JLA) and DUETs.
This report summarises the findings of a meeting convened to promote debate about the role of patients, clinicians and researchers in determining clinical research outcomes.
The meeting was held at the Institute of Education, University of London, on November 20th 2008, and organised jointly by the following UK-based bodies: the JLA; the Social Science Research Unit (SSRU), Institute of Education, University of London; and the Royal College of Nursing (RCN) Research Institute, School of Health and Social Sciences, University of Warwick.
The report was authored by PatientView.
23 pages, November 2008.
For a copy of the report, please Click here

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The role of patient groups in clinical trials in Europe

• Measurement of patient organisations’ involvement in clinical trials in Europe
PatientPartner is a Netherlands-based, 3-year, European Commission-funded project established in May 2008. PatientPartner aims to promote the role of patient organisations in clinical trials in Europe. PatientPartner asked PatientView to drive traffic to an October-December 2008 PatientPartner survey of patient groups in Europe. Around 1,000 patient groups looked at the PatientPartner survey, with 205 patient completing the questionnaire.
PatientPartner notes: “Although not representative of all patient organisations in Europe, this is the only survey to-date that has made an inventory of the experiences of patient organisations on the subject of their involvement in (the development of) clinical trials and research. Until this time, not much information existed on how patient organisations in Europe have been actively involved in clinical trials”.
For more information on the PatientPartner study of patient-group involvement in clinical trials (and the PatientView role in this survey), please click on the following links: methodology or conclusion

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Counterfeit medicines

• What Should be Done About Counterfeit Medicines?: a Survey of Health Campaigners in Europe. Survey conducted during January 2007 on behalf of London-based consultancy, Together4Health. 236 executives from health campaigning groups in 34 countries responded to the survey. For a PDF of this report, Click here. A press release about this report is available on the Together4Health website.

• Bitter Pills: qualitative, in-depth analysis of patients' experiences of substandard and potentially-counterfeit medicines (in their own words. An October 2007 report by London-based consultancy, Together4Health, exploring patients' experiences with counterfeit medicines. Based on the results of a survey of patients conducted by PatientView September-October 2007 on behalf of Together4Health. 657 patients from across the UK and Ireland responded to the survey. A PDF of this report can be obtained by emailing your request to Together4Health Click here.

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Epilepsy

• Patients’ Priorities for Research into Epilepsy. A Survey of Patient Groups 2008
A PDF report by the James Lind Alliance (JLA) and DUETs.
As part of a larger project about future clinical research in the field of epilepsy, DUETs (a UK-based component of the UK National Health Service National Library for Health) invited relevant UK-based patient organisations to respond to a short online survey in 2008, to share their knowledge of the needs and wants of the epilepsy patients they represent.
DUETs wanted to know what questions epilepsy patients have about their treatment – questions that doctors cannot currently answer. In other words, DUETs wished to gather details about those aspects of treatment that patients with epilepsy would like to see addressed by medical research. The DUETs survey, which aimed to find out what epilepsy patients themselves regard as their unmet treatment needs, is a first step in giving epilepsy patients/carers a bigger and more potent voice in medical research. The survey results will feed into a DUETs list of uncertainties in the field of epilepsy research – a catalogue that medical science should be addressing.
Survey of epilepsy patient groups conducted by PatientView.
Report authored by PatientView.
51 pages, 2008.
For a copy of the report, please Click here

• Poster: Patients’ Priorities for Research into Epilepsy
A PDF version of a poster presentation summarising the above report.
Poster produced by PatientView.
1 page, 2008.
For a copy of the poster, please Click here

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Health advocacy

• Challenges Facing the Health Advocacy Community: a Europe-Wide Survey of Health Campaigners, 68 pages, April 2006 (first section of a report on the results of a survey for Health Equality Europe). For a PDF of the report, Click here

• Challenges Facing the Health Advocacy Community: the Views of Policymakers and the Media, 34 pages, April 2006 (second section of a report on the results of a survey for Health Equality Europe). For a PDF of the report, Click here

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Healthcare systems

• Euro Health Consumer Index
Every year, the Brussels- and Stockholm-based think tank Health Consumer Powerhouse (HCP) asks PatientView to conduct research that will help it compile its annual publication, the Euro Health Consumer Index (EHCI)—a comparative analysis of the extent to which each European country’s healthcare system can be described as ‘patient friendly’.

For the fifth, 2009, edition of the EHCI, PatientView surveyed between May and August 2009 the opinions of 490 patient groups throughout Europe.
HCP published the 2009 edition of the Index in September 2009. HCP’s lead findings were that the Netherlands topped its rankings for the second year in a row, and an “emerging pattern among the top countries is that consumer information is driving choice and care quality”.
For the Health Consumer Powerhouse press release on the Euro Health Consumer Index 2009, please Click here
For a PDF of Health Consumer Powerhouse’s Euro Health Consumer Index 2009, please Click here

• PatientView's May 2006 survey of 155 European patient groups allowed these organisations to contribute their opinions to the results of the Health Consumer Powerhouse 'Euro Health Consumer Index 2006', June 2006. Results published by HCP. http://healthpowerhouse.com/media/RaportEHCI2006en.pdf

• Healthcare in 2020: Health Campaigners' Vision of the Future, 15 pages, HSCNews, issue 29, May 2006 (report on the results of a survey for Health Consumer Powerhouse; HCP due to release own report, EU Health Consumerism Policy 2020).
For a PDF of the HSCNews article, Click here

• The Future of the Human Body series: part 1; part 2: the Computerisation of Healthcare; part 3: Engineering Health; part 4: the Burgeoning Field of Wellness R&D; part 5: Bridging the Poverty Gap, October 2005-February 2006 (series of articles written for, and published by, The Economist .com and Aviva). http://www.economist.com/sponsor/forwardthinking/

• PatientView's May 2005 survey of 105 European patient groups allowed these organisations to contribute their opinions to the results of the Health Consumer Powerhouse 'Euro Health Consumer Index 2005', June 2005. Results published by HCP. http://www.healthpowerhouse.com/media/EHCI2005_EN.pdf

• Patients' Perspectives of Healthcare Systems in Europe: a Survey of Health Campaigners, 57 pages, May 2005 (report on the results of a survey for Health Consumer Powerhouse). For a PDF of the report, Click here

• Patients' Views of Primary Care in the UK NHS, 183 pages, March 2001 (report for the North Camden Primary Care Group). For a summary of headline findings, Click here

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Healthcare technology

• NHS Electronic-Booking Technology: Getting it Right for Doctors and Patients, 55 pages, July 2003 (report for EDS/A. T. Kearney). For a PDF of the report, Click here

• The Future of Medical Technology: 2001-2010, 30 pages, December 2001 (report for Imperial College, London). For a PDF of the report, Click here

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Hepatitis B

• Improving the Management of Hepatitis B: a Survey of Health Campaigners, 34 pages, March 2005 (report for Sudler and Hennessey). For a PDF of the report, Click here

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HIV/AIDS

• Euro HIV Index 2009
The Brussels- and Stockholm-based think tank Health Consumer Powerhouse (HCP) asked PatientView to conduct research to help it compile its latest publication, the Euro HIV Index 2009 – a comparative analysis of the HIV policy, treatment and care found throughout the healthcare systems of Europe.
For theIndex, PatientView surveyed between March and June 2009 the opinions of 556 patients throughout Europe.
HCP published the Euro HIV Index 2009in October 2009. HCP’s lead findings were that Luxembourg topped its rankings for involvement, patients’ rights, and access to treatment and care, Switzerland headed its rankings for prevention, and Malta did best in outcomes. and an “emerging pattern among the top countries is that consumer information is driving choice and care quality”.
For the Health Consumer Powerhouse press release on the Euro HIV Index 2009, please Click here
For a PDF of Health Consumer Powerhouse’s Euro HIV Index 2009, Click here

• Opinions Held by Specialists on the Primary-Care Management of HIV Patients, 133 pages, April 2002, ISBN 1-904394-00-0 (published in collaboration with the Terrence Higgins Trust and the British HIV Association, London). For a PDF of the report, Click here

• Managing HIV: a New Role for GPs?, 109 pages, December 2001 (published in collaboration with the Terrence Higgins Trust, and presented to the Royal College of General Practitioners' Sex, Drugs and HIV Task Group).
For a PDF of the report, Click here
For a PDF of a one-page article on the report, Click here

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Hospital-acquired infections

• Hospital-Acquired Infections: the Way Forward, 60 pages, June 2005 (report for the Irish Patients' Association). Published by the IPA. http://www.irishpatients.ie/index.cfm/loc/3-4/pt/0/spid/3BC3E0A7-132F-4ED4-A7D83B817669A15E.htm
HSCNews Issue 18 May 2005.pdf
Global
60 pages
Key health campaigners have been leading high-profile campaigns to provoke their governments and healthcare systems into taking action on the prevalence of hospital-acquired infections
HOSPITAL-ACQUIRED INFECTIONS: GLOBAL SURVEY AND INTERVIEWS WITH 3 HEALTH CAMPAIGNERS: pages 5-60
-- Hospital-acquired infections--a major cause of death and sickness: pages 5, 6 and 7
-- International organisations involved in aspects of HAI reporting: page 6
--The European Commission's 'Luxembourg Declaration': page 7
--The Irish Patients' Association initiates a global survey on HAIs: page 8
--About the respondents: page 9
--Public fear of hospital-acquired infections: pages 10-11
--Preventing hospital-acquired infections: pages 11-13
--Public reporting of HAIs: pages 13-14
--Who is pressing for change? Pages 15-16
--Conclusion: pages 17-19
--Profile of respondents: pages 20-22
--Respondents' comments: pages 23-35
--Interview: Stephen McMahon of the Irish Patients' Association: pages 36-43
--Interview: Simon Williams of the Patients' Association: pages 44-52
--Interview: Lisa McGiffert of the Consumers Union campaign 'Stop Hospital Infections.org': pages 53-60

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Life sciences industries

•The Future of the Life Sciences Industries: Transformation Amid Rising Risk
A PDF white paper by Deloitte Touche Tohmatsu (DTT), developed in collaboration with the Economist Intelligence Unit (EIU).
The white paper’s findings are drawn from a global survey of (and individual interviews with) leaders in life sciences industries. “During late 2008, DTT and EIU professionals conducted a global online survey of 360 senior executives in the life sciences industries. The survey asked executives to predict the level of change their companies will undergo in the future to address growing risk, and what areas would face the highest growth in risk. The survey also examined how companies will increase proficiency and deal with rising risks in these areas, as well as how they would manage internal and external risk. Individual interviews were also conducted with board-level executives in the life sciences and healthcare industries.”
Report authored by PatientView CEO, Dr Alexandra Wyke.
36 pages, February 2009.
For a copy of the report, please Click here

• The Future of the Life Sciences Industries: Strategies for Success in 2015, report authored by Alexandra Wyke of PatientView on behalf of The Economist Intelligence Unit; published by Deloitte, 4th quarter 2006. http://www.deloitte.com/dtt/cda/doc/content/2006FutLifScnRptFINAL.pdf

• Foreign Drug Companies in India and China: a Comparative View, 6 pages, November 2005 (executive summary to an Economist /Ernst & Young survey). http://graphics.eiu.com/files/ad_pdfs/eiu_wp_ey_pharma_dec_2005.pdf

• The Future of the Life Sciences Industries: Ageing Pharmaceuticals and Growing Biotech, 32 pages, January 2005 (white paper to an Economist /Deloitte survey). http://www.deloitte.com/dtt/cda/doc/content/DTT_Lifesciences_survey.pdf

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Local healthcare commissioning

•Local Healthcare Commissioning: Grassroots Involvement?
A PDF report by the Royal College of Nursing (RCN) and National Voices.
This report contains the results of an October-December 2008 survey of UK patient groups on the subject of the effectiveness of local healthcare commissioning (LHC) processes. The report reveals that attempts by the UK government to involve the country’s patients and the public in the commissioning of local health services are failing. The survey found that many UK patients feel that local healthcare commissioning, the procedure intended to ensure that health and care services effectively meet the needs of the local population by engaging with patient representatives, is not working effectively.
Survey of relevant patient groups conducted by PatientView.
Report authored by PatientView.
52 pages, February 2009.
For a copy of the report, please Click here

The Appendix to the above report contains amalgamated profiling details about the respondent body, plus all respondents’ comments to the survey.
Appendix authored by PatientView.
99 pages, February 2009.
For a copy of the Appendix, please Click here

For a copy of the National Voices February 2009 press release accompanying the report, please Click here

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Medical research and clinical trials

• Patients and researchers: tackling treatment uncertainty together, 12 pages, HSCNews, issue 24, December 2005 (report on part of a James Lind Alliance meeting at the Royal Society of Medicine, December 2005). Also published by the JLA. http://www.lindalliance.org/pdfs/HCSNewsUserinputintomedicalrecordsintheUK.pdf

• Results of the Pilot Scheme to Investigate the Feasibility of Collecting Information about Clinical Research from Campaigning Groups, 12 pages, April 2005 (report on the results of a survey for Current Controlled Trials). Published by CCT. http://www.controlled-trials.com/news/HSC_Survey_april05.doc

• Confronting Important Uncertainties about the Effects of Treatments, 10 pages, March 2004 (report for the James Lind Alliance). Also published by the JLA. http://www.rsm.ac.uk/new/downloads/hscnews.pdf

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Mental Health

• Mental Health Europe's Action Plan to Fight Discriminatory Practices in Europe, 20 pages, HSCNews, issue 7, May 2004 (report on a Mental Health Europe meeting, Brussels, April 2004). Also published by the Communication Initiative. http://www.comminit.com/strategicthinking/st2005/thinking-950.html

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Patient-centered care

• Fixing Healthcare: the Professionals’ Perspective
A PDF white paper by the Economist Intelligence Unit (EIU), on behalf of Philips and its new GetInsideHealth website.
This white paper contains the results of a December 2008-January 2009 survey of 653 health professionals and 122 life-sciences industries executives, based in four countries with very different healthcare systems: the US (33% of respondents), the UK (18%), India (18%), and Germany (15%).
The survey respondents believe that patients will play a key role in making healthcare systems sustainable in the future. Other findings from the research include: healthcare professionals in developed economies are feeling the pinch; in India, the future looks brighter; some healthcare policies are having counterproductive effects; proactive patients are stretching healthcare systems; and prevention is better than cure.
Report authored by PatientView CEO, Dr Alexandra Wyke.
36 pages, March 2009.

For a copy of the report, please click here [link takes you to the Philips GetInsideHealth website, where a simple registration process allows access to the free white paper]

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Patient information

• MHRA Public Consultation with Patient Representatives: Medicines Information and Advertising, 48 pages, September 2005 (report on the results of a UK survey for the MHRA). For a PDF of the report, Click here

• MHRA Public Consultation with Patient Representatives: Medicines Information and Advertising--Appendix, 82 pages, September 2005 (second section of a report on the results of a UK survey for the MHRA). For a PDF of the report, Click here

• The Information Needs of Patients with Cancer, 3 pages, CancerFutures, volume 2, issue 1, February 2003 (article for, and published by, CF). http://www.cancerworld.org/CancerWorldAdmin/images/static_modules/images/1428/CF_1_Vol2_33.pdf

• Prescription Medicines Information for the Public: a Strategy Document , 62 pages, November 2002, ISBN 1-904394-05-1. For a PDF of the report, Click here

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Patients' quality of life

• The first survey by the QALYity Project, December 2006-January 2007, The QALYity Project sent a questionnaire to national, regional and local patient/health advocacy groups across England and Wales, exploring their opinions on the subject of patients' quality of life. 271 groups responded to the survey.
For the results of the QALYity project's first quality-of-life survey, Click here
For a list of 108 UK health advocacy groups particularly interested in quality-of-life issues, Click here

• The second survey by the QALYity Project, March 2007-September 2007, During 2007, PatientView and HSCNews International each carried out a survey of patients on the subject of their quality of life. Generating responses from 3,471 patients, the two surveys together rank among the world's largest on the topic of patients' quality of life. They were also unique in being the first surveys ever in which patients themselves defined what constitutes their quality of life.
The PatientView survey was conducted among 2,286 patients in England and Wales on behalf of the QALYity Project, and ran from March-September 2007. A parallel HSCNews survey of 1,185 patients worldwide ran from March-June 2007. The results of both surveys were pooled, and published in a pair of issues of HSCNews : issue 37 (June 2007) (click here for a free PDF of this issue), and issue 39 (October 2007) (click here for a free PDF of this issue).
A peer-reviewed article on the QALYity Project/PatientView England and Wales survey was published in the British Journal of Healthcare Management (BJHCM), July 2008, vol 14, no 7.

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Patients' rights

• The Evidence on Patients' Rights in Europe: an Active Citizenship Conference, 10 pages, HSCNews, issue 36, April 2007 (report on the results of a survey on behalf of the Patients Association). For a PDF of the report, Click here

• Should the UK National Health Service Take More Account of Patients' Rights?, 42 pages, November 2006 (report on the results of a survey on behalf of the Patients Association). For a PDF of the report, Click here

• Public Perception of Patients' Rights Within the NHS, 76 pages, December 2005 (report on the results of a public opinion poll for the Patients' Association). http://www.patients-association.org.uk/publications_level2.asp?level2_ID=251

• Patients' Rights in Europe and the UK, 27 pages, December 2005 (background report for the Patients' Association). For a PDF of the report, Click here

• Patients' Rights in Europe: a Citizens' Report, 18 pages, March 2005 (summary of meeting organised by Active Citizenship Network at the European Parliament, Brussels, February 28th to March 1st 2005; report for OxfordVision 2020). http://www.oxha.org/knowledge/publications/oxha_dialogue_patient_rights.pdf

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Prevention

• The Prevention and Risk Management of Heart Disease and Stroke: the Needs of Patients, 61 pages, December 2006 (report on the results of a survey on behalf of Heart EU). For a PDF of the report, Click here

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Rheumatoid arthritis

• Services for people with rheumatoid arthritis in England
In July 2009, England’s National Audit Office (NAO), an official body that oversees government spending, issued a report into the country’s healthcare service provision for people with rheumatoid arthritis (RA). As part of its research into the subject of RA services, the NAO commissioned PatientView to conduct two surveys, and to produce a PatientView report on the findings of each.
The first survey, conducted by PatientView October 2008-November 2008, examined the attitudes to the country’s RA services held by 30 English patient groups.
The second survey, conducted by PatientView November 2008-January 2009, looked at the opinions of 1,400 people with RA (and their carers) to the country’s RA services.
Two PDF reports for the National Audit Office , 117 pages and 137 pages, March 2009.
For the two PatientView reports, please click as follows:
Patient Groups on Rheumatoid Arthritis and the NHS
Survey of People with Rheumatoid Arthritis

For a link to details about the NAO’s completed investigation into RA services in England, please Click here

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Stroke Care

• Department of Health: Progress in Improving Stroke Care
In February 2010, England’s National Audit Office (NAO), an official body that reviews government spending for value for money, issued a report into the degree to which the country’s healthcare service provision for people with stroke had improved since 2005. As part of its research into the subject of stroke services, the NAO had commissioned PatientView to conduct two surveys.
The first survey, conducted by PatientView both online and by post, May-June 2009, examined the attitudes to the country’s stroke services held by 46 English patient groups that have an interest in stroke.
The second survey, conducted by PatientView both online and by post across England, June-September 2009, gathered the views on stroke services of 447 people with stroke and 337 individuals who care for people with stroke (784 respondents in total).
The NAO incorporated the findings of the latter survey into its February 2010 report, Progress in Improving Stroke Care.
For a pdf of Progress in Improving Stroke Care, please Click here
For an NAO summary of the patient survey, Progress in Improving Stroke Care: Patient Survey, February 2010, pdf, 94 pages, please Click here