Main findings overview 3

Why patient groups can comment on doctors 6

Current doctor-patient relations 8
Improving doctor-patient relations 13
Whose role is it to… 23
What pharma companies can do 24
Should a patient be called a patient? Linkedin discussion 27
Appendix I: Responses analysed by country 40
Appendix II: Responses analysed by disease area 107
Appendix III: Profiles of patient groups 306
Winter 2011

What do patients think of doctors?

A global survey of 2,500 patient groups

Executive summary
February 2011 sees the second PatientView Quarterly,
which (because of the size of the undertaking)
combines both autumn 2010 and winter 2010-2011
issues.
The second PatientView Quarterly studies the opinions
of almost 2,500 international, national or local
patient groups from 35 countries around the world,
covering over 55 different specialisations (both rare
and common, chronic diseases). The topic on which
the patient groups comment is what patients think of
doctors—or, more specifically, “how doctor-patient
relationships can be improved”.
A special effort was made to capture the views of
patient groups from the following 12 countries or
regions of the world, and from those in the following
12 specialties:
● Australia [number of completed responses = 60];
Canada [138]; Eastern Europe [105]; France [80];
Germany [100]; Italy [110]; the Netherlands [30];
New Zealand [55]; Spain [80]; Sweden [56]; the UK
[566]; and the USA [292].
● Cancer [160]; diabetes [55]; gastro-intestinal [40];
heart and circulatory conditions [70]; HIV/AIDS
[72]; mental health [170]; multiple sclerosis [35];
neurological [195]; Parkinson’s disease [30]; rare
diseases [70]; respiratory [35]; and rheumatological
conditions [55].
© PatientView, 2011
Executive summary
How we ran the study
To support the exercise, PatientView set up a discussion
on the PatientView LinkedIn Patients’ Page to ask for
ideas about the type of questions that should be asked
on doctor-patient relationships. The posting attracted
25 commentators. Their suggestions were incorporated
into the final questionnaire, which covered the
following subject areas:
The current state of relationships between patients
and general physicians, specialists/consultants, and
specialist nurses.
Who in healthcare can legitimately and constructively
help improve doctor-patient relationships?
Improving access to health professionals
● The types of improvements in access to general
physicians (GPs) that are needed by patients
● The types of improvements in access to consultant/
specialists that are needed by patients
Improving the patient information provided by health
professionals
● The types of improvements to information on
diagnosis and treatment that are needed by patients
● The types of improvements to other categories of
health information that are needed by patients
Improving doctor-patient communication
Access and choice during diagnosis and treatment—
improvements needed by patients
(including a question about the desirable goals of
treatment)
3

How health professionals can gain patient trust
How health professionals can respect patients’ valuable
time
How health professionals can be made more accountable
(both inside and outside the consulting room)
How health professionals might improve their prevention
practices
What single action do patients want from government
and payers to improve doctor-patient relationships?
Which pharma companies have a positive record on
helping to improve doctor-patient relationships, and why?
Why pharma can have a negative impact on doctor-
patient relationships
Profiling and mapping respondents
A detailed map and profile of many of the respondent
patient groups is offered, comprising: their geographic
remit; dates when founded; the number of members;
the umbrella organisations to which they belong;
their sources of funding; the strength of their current
relationships with health professionals; their general
activities; and their ability to represent patients.
The listing allows readers to gain a more in-depth
understanding of the types of respondents answering
the survey.
Main findings
Current doctor-patient relations
With the exception of patient groups in Eastern
Europe and those specialising in HIV/AIDS, only a
minority of patient groups believe that doctor-patient
relations remain traditional and patriarchal. But,
equally, only a minority consider that doctors now
treat patients as equal partners. One notable exception
are the consultants/specialists (such as neurologists
and geriatricians) who treat people with Parkinson’s
disease. 50% of Parkinson’s disease groups say that
consultants/specialists regard patients as equal
partners, and act upon that belief.
Patients’ treatment goals
The majority [72%] of the respondents identify two
main goals that patients have in mind whenever they
visit a doctor or other health professional for treatment
and care: firstly, that the health professional should
provide treatments which enable the patient to lead a
normal (or near-to-normal) life—even if the patient
may have a shorter life expectancy as a consequence
[mentioned by 39% of the respondents]; and, secondly,
© PatientView, 2011
Executive summary
that the health professional should provide treatments
which broadly satisfy the patient’s expectations
[mentioned by 33% of respondents].
Three measures needed to improve doctor-patient
relations
The respondent patient groups were told that if
government, insurers and managed-care organisations
were only able to make a single intervention aimed at
improving doctor-patient relations, which intervention
would most benefit the patients in their own specialty?
The respondents’ top three choices are: improving
patients’ quality of life as a result of treatment and
care [mentioned by 19% of respondents]; improving
the communication and understanding skills of
healthcare professionals [17%]; and improving access
to consultants/specialists [14%].
Measure 1: improving patient quality of life
A number of different, but related, questions were
asked about how health professionals might improve
the quality of life of patients. Patient groups’ views on
the subject vary according to their country of origin
and medical specialty, but, in general, half (or close
to half) of the groups feel that health professionals
should diagnose and treat without making the patient
fight the system to receive the diagnosis, medical
treatment, care or support they need [mentioned by
53% of respondents], and health professionals should
provide treatments that are most effective for the
patient—irrespective of cost [49%]. 45% also believe
that health professionals who are keen on improving
patient quality of life need to maintain a continuous
relationship with the patient, chiefly by supporting the
patient’s management of their own care (including, for
instance, offering access to multi-disciplinary teams of
care providers).
Measure 2: improving the communication skills of health
professionals
Around half of patient groups would like health
professionals to improve their communication skills
by ...
● Regarding the patient as a person, and not as a
medical problem. (An exception here are Parkinson’s
patient groups; just 35% of them describe this
attitudinal change as a desirable goal.)
● Diagnosing and treating only after discussing the
situation and the treatment options extensively with
the patient. (An exception here are gastrointestinal
patient groups; just 43% of them rate this a
desirable goal.)
● Providing more patient information. Across
the entire patient-group sample, the top-three
choices are: more information on treatment
choices [mentioned by 48% of the groups]; more
4
 Current doctor–patient relations

How doctors, nurses and patients

get along today

Patient groups report that health professionals, though GPs: Percentage of patient groups saying that GPs
not as patriarchal as they used to be towards patients, still are paternalistic in their approach to patients
Treat patient as equals, %
have yet to reach a state of true partnership with patients.
Without such partnerships, noted the respondent patient Germany 17
groups, patients’ clinical outcomes can suffer. New Zealand 18
This survey of the opinions of patient groups asked Italy 25
respondents to assess the state of current doctor-patient
Netherlands 28
relationships. Respondents were offered four possible
responses: traditional and patriarchal; try to partner with Canada 30
patients, but do not always succeed; regard patients as equal Sweden 30
partners, act upon that belief; and vary according to the UK 30
individual health provider.
Australia 31
Only a minority of the respondent patient groups
believe that the current relationships between general Spain 32
physicians or consultants/specialists and patients remain USA 32
traditional and patriarchal (though patient groups in France 33
Eastern Europe, and to a certain extent, groups specialising
Eastern Europe 47
in HIV/AIDS, are not so sure that today’s doctors are less
Source: PatientView survey, 2010.
high-handed and domineering than their predecessors of
previous generations). Equally, however, only a minority of
patient groups consider that doctors treat patients as equal GPs: Percentage of patient groups saying that GPs
partners. The responses received from the patient groups regard patients as equal partners, and act on that belief
Treat patient as equals, %
are outlined in further detail below.
Netherlands 31
Today’s doctor-patient relationships—in different Germany 23
countries France 23
Consultants/specialists are generally considered by patient
Australia 15
groups in various countries to be more paternalistic
towards patients than general physicians (GPs). In most Italy 14
countries, however, consultants/specialists do better than Canada 11
GPs in being able to treat patients as equal partners. Patient UK 10
groups across the world seem to rate specialist nurses as
New Zealand 9
best at forming partnerships with patients. That said, the
health professionals of no countries score particularly USA 8
highly in being able to regard patients as equal partners, Eastern Europe 8
and acting upon it. Sweden 7

Spain 5
Source: PatientView survey, 2010.

© PatientView, 2011 8
 What can pharma companies do?

Can pharmaceutical and medical device

companies help to improve doctor-patient
relations?
The respondent patient groups were asked to note any companies which they believe have introduced activities or
strategies to improve doctor-patient relations. Seventy companies were named (some several times).

Healthcare companies mentioned by respondents as having had a positive effect upon doctor-patient relationships in their country
Number Number Number
of of of
mentions mentions mentions

Abbott 6 Da Vinci Robotic Surgery System 1 Novo Nordisk 5

Abbott Diagnostic 1 Desitin 1 Nycomed 1
Abbott Italia 1 Eli Lilly 12 Ortho McNeil 1
Actelion Pharmeuticals France 1 Esparma 1 Pfizer 19
Alcon 1 Ferring Pharmaceuticals 1 Pharmacy Guild of Australia 1
Allergan 1 Gilead 3 Q-pharma 1
Amgen 2 GSK 12 Roche 15
Arthotec 1 Ipsen 1 Roche Diagnostics 2
Astellas 1 Janssen Ortho 1 Sanofi Aventis 4
AstraZeneca 6 Janssen Cilag 2 Schering Plough 1
Baxter 1 Juvela 1 Servier 1
Baxter Healthcare 1 LEM (Les Entreprise du Médicament) 1 Solvay 1
Bayer 1 Leo Pharma 1 St Jude 1
Bayer Schering 1 Lifescan Italia 1 Storz 1
Berlin Chemie 1 London Drug Co in BC 1 Stryker 1
Betapharm 1 Lundbeck 1 Takeda 3
Biogen Idec 2 Medel 1 Talecris Biotherapeutics 1
Boehringer Ingelheim 1 Medtronic 3 Teva 1
Bristol Myers Squibb 1 Menarini 1 Tibotec 1
Celgene 1 Merck 1 UCB 2
Centocor 1 Merck Serono 1 Verband Forschender Arzneimttelher 1
steller (VFA)
Clinuvel 1 MSD 2
Worwag Pharma 1
CT Arzneimittel 1 Novartis 12
Cyberonics Europe 1 Novartis Oncology 1

© PatientView, 2011 24
 What can pharma companies do?

Healthcare companies mentioned by respondents as having had a positive effect upon doctor-patient relationships in their medical specialty
Number of Number of Number of
mentions mentions mentions

AstraZeneca 3 Efalex 1 Nycomed 1

Abbott 4 Eli Lilly 15 Permamed 1
Abbott Diagnostic 1 Esparma 1 Pfizer 16
Actelion Pharmeuticals France 1 Ferring Pharmaceuticals 2 QPharma 1
Amgen 1 GSK 9 Roche 11
Arthrotec 1 Ipsen 1 Roche Diagnostic 3
AstraZeneca 2 Janssen / Janssen Cilag 4 Sanofi Aventis 6
Bayer 1 Janssen Ortho 1 Servier Int 1
Bayer Schering 2 Juvela 1 Solvay 2
Berlin Chemie 1 LEM (Les Entreprise du Médicament) 1 Storz 1
Betapharm 1 Lifescan Italia 1 Striker 1
Beximco Pharmaceutical Ltd/ 1 Lundbeck 3 Takeda 5
Bangladesh
Medtronic 4 Temmler 1
Biogen Idec 4
Menarini 1 Teva 2
Bristol-Myers Squibb 1
Merck 1 UCB Pharma 1
Celgene 1
Merck Serono 1 Vifor 1
Centocor 1
Merck Sharp & Dohme 1 Worwag Pharma 1
CT Medicines 1
Novartis 13
Cyberonics Europe 1
Novartis Oncology 2
Da Vinci Robotic Surgery System 1
Novo Nordisk 5
Desitin 1

The groups offer their reasons why the services of these Canada
healthcare companies have proved valuable in improving Being involved with patients, doctors and researchers
doctor-patient relationships [full details to be found in the Educating both professionals and patients about doctor-
Appendices]. patient relations
Funding condition-specific patient information meetings
The following activities are reported as being performed by at Providing compassionate access to expensive medications
least one healthcare manufacturer (and sometimes several) in Providing patient information about doctor-patient
each country communications
Providing patient information about individual conditions
Australia Providing patient-centred support services
Conducting research Running patient-education meetings about individual
Developing monitoring of prescribed medications conditions
Encouraging patients to offer their views Supporting patient educational opportunities
Flagging unsafe medications Supporting patient group fundraising efforts
Providing GP education meetings
Providing patient education services Eastern Europe
Providing patient information on compliance Educating doctors in partnering with patients
Sponsoring forums and conferences for doctors and General cooperation
patients Monitoring patients’ views
Sponsoring ongoing education Providing material support for the leisure activities of
Supporting patient groups hospitalised patients
Training health professionals Supporting patient group efforts to promote patients’ rights
Supporting patient group efforts to promote the de-
stigmatisation of people with a mental health problem

© PatientView, 2011 25
 What patients say Appendix I Countries

Australia
Number of Australian groups responding to the survey: 60

About your organisation

Groups’ area of expertise:
Anxiety 3.3% / Arthritis (including ankylosing spondylitis) 3.3% /
Asthma (including COPD) 3.3% / Ataxia 1.6% / Blood disorders
3.3% / Cancer (with life expectancy of five years or more) 8.2% /
Cancer (with life expectancy of less than five years) 1.6% / Chronic
disease 4.9% / Continence 1.6% / Dementia 1.6% / Deafness 1.6% /
Depression 1.6% / Disability (excluding eyesight, deafness or speech)
3.3% / Eating disorders 1.6% / Health (general) 3.3% / Heart disease
(congestive) 1.6% / HIV/AIDS 3.3% / Internal organ abnormalities
1.6% / Injury 1.6% / Kidney 3.3% / Mental health 26.2% /
Motor-neurone disease 1.6% / Multiple sclerosis 1.6% / Post-polio
syndrome 1.6% / Rare diseases (not genetic) 1.6% / Sexual diseases
3.3% / Speech disorder 1.6% / Stroke 1.6%
Geographic areas of respondent groups:
International 14.5% / National 39.5% / Local or regional within a
single country 46.1%
Date when group was founded:
Before 1950 1.4% / 1950–1975 17.8% / 1976–1990 38.4% / 1991–
1995 15.1% / 1996–2000 16.4% / 2001–2005 8.2% / 2006–present
day 2.7%
Number of people represented by the respondent groups:
At least 290,814
Umbrella organisations of respondent groups (number of groups)
[reproduced as reported by respondents]:
AFDO 1 / AICAFMHA 1 / AIPN 1 / AISSG 1 / Alzheimers Australia 1/
Arthritis Australia 1 / Asthma Australia 1 / Australian Federation of
AIDS Organisations 1 / Cancer Voices Australia 1 / Cancer Voices
NSW 1 / Commonwealth Respite & Carelink Centres 1 / Continence
Foundation of Australia 1 / Cystic Fibrosis Australia (CFA) 1 /
Hunter New England Area Health Service 1 / MIFA (Mental Illness
Fellowship of Australia) 2 / MNDA 1 / National Associaton of People
Living with HIV/AIDS 1 / Porphyria Association Inc (developed out
of PEGS) 1 / Prostate Cancer Foundation of Australia (PCFA ) 1 /
Prostate Cancer Foundation of Australia; Central Australia Chapter 1
/ Rural Health Service 1 / St Vincent DePaul Society 1 / Thalassaemia
International Federation 1 / Tourette Syndrome Association of
Australia 1
Largest sources of funding of respondent groups:
The public (donations; events; wills, etc) 34.2% / National
government 32.9% / Local government 15.8% / Membership fees
10.5% / Other patient organisations (such as umbrella groups) 1.3%
/ Industry 1.3% / Academia 1.3% / International agencies (such as
the UN) 0.0% / Trade blocs (such as the European Commission)
0.0% / Lottery funds 0.0% / Medical professional bodies/societies
0.0% / I do not know 2.6%

About your organisation’s activities

Relationships with health professionals:

Only 14% of groups from Australia report having specialists/consultants on their board; 12% say that they have specialist nurses on their staff.

Organisation’s relationship at board and staff levels They are on our staff They are on our board
General physicians 1% 7%
Specialists/consultants 6% 14%
Specialist nurses 12% 7%
Hospital nurses 4% 3%
Primary care nurses 7% 1%

Patient groups in Australia have good contact with health professionals. 84% maintain at least occasional contact with general physicians
(GPs), 78% with specialists/consultants, and 72% with specialist nurses.

Contact of organisation with We have Occasional No I do

health professionals frequent contact contact contact not know
General physicians 29% 55% 9% 1%
Specialists/consultants 36% 42% 7% 1%
Specialist nurses 36% 36% 16% 1%
Hospital nurses 32% 42% 17% 3%
Primary care nurses 29% 33% 26% 4%

© PatientView 2011 41
 Appendix II Disease areas

Rheumatological Sample comments:

conditions In favour of industry intervention aimed at improving doctor-patient relations
—“All are inter-related as a package to maintain patient health and safety.”
—“Everyone needs to be at the table.”
—“All need to do their bit in caring.”
—“It should be a partnership, to enable doctors to improve their skills.”
—“Everyone has a role to play.”
—“Everyone who is involved in the healthcare system has a role to play, to different degrees. Insofar as the patient is at the centre
of the health system, and their main interface is with their doctor, from which everything else flows, in most instances.”
—”All of the above have a role to play. May their voices sing the same tune.”
Against industry intervention aimed at improving doctor-patient relations
—“Las farmaceúticas no deberían intervenir en la decisión del médico de mandar un tratamiento u otro.” [“Drug companies
should not intervene in the doctor’s decision to prescribe a treatment.”]
—“La gestion de la pratique médicale est totalement sous l’emprise de l’ordre des médecins dans mon pays.” [“In my country, the
management of medical practice is completely under the influence of the doctors.”]

How government, insurers and managed-care organisations can improve doctor-patient relationships—from the patient perspective
Rheumatology patient groups consider that the single most-valuable action which government, insurers, and managed-care organisations
could take to improve doctor-patient relations would be to make efforts to enhance patients’ quality of life as a result of treatment and care.
The second most-important innovation by government, insurers, and managed-care organisations would be ensuring that patients have better
access to consultants/specialists. The third would be to produce initiatives that could increase the communication and understanding skills of
healthcare professionals.

If government, insurers and managed-care organisations were only able to make a single intervention aimed at
improving doctor-patient relations, which intervention would most benefit the patients in your specialty?
[Please tick one option] Rank % of total
Patients’ quality of life as a result of treatment and care 1st 20%
Access to consultants/specialists 2nd 19%
The communication and understanding skills of healthcare professionals 3rd 13%
Health professionals’ ability to provide continuity of care 4th 9%
The information that healthcare professionals deliver to patients = 5th 7%
Patient choices in treatment and care = 5th 7%
Access to general physicians = 7th 6%
The equitable delivery of treatment and care = 7th 6%
Patients’ trust in health professionals = 7th 6%
The accountability of health professionals 10th 4%
Patients’ waiting times = 11th 2%
Health professionals’ preventive services = 11th 2%

Sample comments:
—“A public-awareness campaign.”
—“Caring.”
—“In certain areas, the waiting lists are far too long.”
—”Affordable medical care. Access to health insurance and care.”
—“Change from visit-based payment.”
—“Free access to the best care.”
—“Greater GP awareness of arthritis and the needs of people with arthritis.”
—“Not just a ‘patient’. Be treated as an individual.”
—“Links to supportive advocacy organisations.”
—“Les médecins français sont plus techniciens que conseils.” [“French doctors are more technicians than advice-givers.”]
—“Tempi di attesa per l’accesso alle visite specialistiche.” [“Waiting times for access to specialist visits.”]
—“Die möglichkeit eine einheitliche behandlung innerhalb österreich zu bekommen, jede kasse behandelt die poatienten
anderst.” [“To get the possibility of uniform treatment in Austria, each patient is covered by a fund.”]

© PatientView 2011 304


Argentina
Fundación Natalí Dafne Flexer (FNDF)
Web address: http://www.fundacionflexer.org/
Country headquarters: Argentina.
Area of expertise: Cancer infantil.
Geographic remit of organisation: International.
Period in which organisation was founded: 1991
– 1995.
Largest source of funding: The public (donations;
events; wills, etc).
Main activity/ies:
Advocacy/campaigning/lobbying at local/national
level.
Building competency among patient groups.
Providing information to patients.
Services that support treatment and care.
Other activity/ies:
Financing or conducting medical R&D.
Representing patients’ interests to national/local
government.
Representing patients’ interests to healthcare
providers.
Training patients to get the best out of the system.
Training health professionals.
Activity/ies not conducted:
Developing guidelines and frameworks for the
healthcare system.
Practical services: Palliative care. Home help.
Access to consultants. Medication. Medical
devices. Equipment / furniture for patients.
Monetary grants for patients.
Contact with health professionals:
General physicians: Occasional contact.
Specialists/consultants: They are on our staff.
Specialist nurses: Occasional contact.
Hospital nurses: No contact.
Primary care nurses: No contact.
Communicating with patients: Contacto directo
personal con 1,000 familias por mes.
Collecting information from patients: On an
ad-hoc basis, as patients approach us. From our
own focus groups. Through our contacts with our
peer organisations.
Armenia
Unison NGO for Support of People with Special
Needs
Web address: http://www.unison.am/
Country headquarters: Armenia.
Area of expertise: Disability (excluding eyesight,
deafness or speech).
Geographic remit of organisation: National.
Period in which organisation was founded: 2001
- 2005.
Size of membership: 251 - 500.
Largest source of funding: International agencies
(such as the UN).
Main activity/ies:
Advocacy/campaigning/lobbying at local/national
level.
Other activity/ies:
Providing information to patients.
Representing patients’ interests to national/local
government.
Representing patients’ interest to healthcare
providers.
© PatientView 2011
Profiles of the respondent groups
Activity/ies not conducted:
Building competency among patient groups.
Developing guidelines and frameworks for the
healthcare system.
Financing or conducting medical R&D.
Services that support treatment and care.
Training patients to get the best out of the system.
Training health professionals.
Practical services: Home help. Medical devices.
Equipment / furniture for patients.
Contact with health professionals:
General physicians: We have frequent contact.
Specialists/consultants: We have frequent contact.
Specialist nurses: We have frequent contact.
Hospital nurses: We have frequent contact.
Primary care nurses: Occasional contact.
Communicating with patients: By mail / letters /
post. Electronic newsletter/s. Telephone.
Collecting information from patients: From
the online form on our website’s ‘Contact Us’
page. Through our own systematic and regular
surveys of patients. By participating in relevant
conferences.
Australia
Alzheimer’s Australia WA (Western Australia) Ltd
Web address: http://www.alzheimers.org.au/
Western-Australia.aspx/
Country headquarters: Australia.
Area of expertise: Dementia.
Geographic remit of organisation: Local or
regional within a single country.
Period in which organisation was founded: 1976
- 1990.
Size of membership: 2,501 - 5,000.
Umbrella groups: Alzheimers Australia.
Largest source of funding: National government.
Main activity/ies:
Advocacy/campaigning/lobbying at local/national
level.
Providing information to patients.
Representing patients’ interests to national/local
government.
Representing patients’ interest to healthcare
providers.
Training health professionals.
Other activity/ies:
Building competency among patient groups.
Developing guidelines and frameworks for the
healthcare system.
Services that support treatment and care.
Training patients to get the best out of the system.
Activity/ies not conducted:
Financing or conducting medical R&D.
Practical services: Home help. We have our own
nurses.
Contact with health professionals:
General physicians: Occasional contact.
Specialists/consultants: We have frequent contact.
Specialist nurses: We have frequent contact.
Hospital nurses: Occasional contact.
Primary care nurses: We have frequent contact.
Communicating with patients: By mail / letters
/ post. Via our website. Electronic newsletter/s.
Email. Telephone. Social networking (eg Twitter,
Facebook).
Collecting information from patients: Through
our own systematic and regular surveys of
patients. From our own focus groups. By
Appendix III Profiles
participating in relevant conferences. Through
our contacts with doctors and other health
professionals. Through our contacts with our peer
organisations. Through our contacts with local
or central government. From news items in the
media. Consumer Advisory Group.
Asthma Foundation of Tasmania
Web address: http://www.asthmatas.org.au/
Country headquarters: Australia.
Area of expertise: Asthma (including COPD).
Allergy and anaphylaxis.
Geographic remit of organisation: Local or
regional within a single country.
Period in which organisation was founded: 1950
- 1975.
Umbrella groups: Asthma Australia.
Largest source of funding: The public (donations;
events; wills, etc).
Main activity/ies:
Providing information to patients.
Other activity/ies:
Advocacy/campaigning/lobbying at local/national
level.
Building competency among patient groups.
Developing guidelines and frameworks for the
healthcare system.
Financing or conducting medical R&D.
Representing patients’ interests to national/local
government.
Representing patients’ interest to healthcare
providers.
Services that support treatment and care.
Training patients to get the best out of the system.
Training health professionals.
Practical services: Access to consultants.
Medication. Medical devices. Equipment /
furniture for patients.
Contact with health professionals:
General physicians: We have frequent contact.
Specialists/consultants: We have frequent contact.
Specialist nurses: We have frequent contact.
Hospital nurses: We have frequent contact.
Primary care nurses: They are on our staff.
Communicating with patients: By mail / letters /
post. Via our website. Email. Telephone.
Collecting information from patients: Through
our own systematic and regular surveys of
patients. Through our contacts with doctors and
other health professionals.
Australian Arachnoiditis Sufferers Queensland
Association (AASQA) Inc.
Web address: no active website
Country headquarters: Australia.
Area of expertise: Arachnoiditis.
Geographic remit of organisation: National.
Period in which organisation was founded: 2001
- 2005.
Size of membership: 10 - 100.
Largest source of funding: Membership fees.
Main activity/ies:
Providing information to patients.
Representing patients’ interests to national/local
government.
Representing patients’ interest to healthcare
providers.
Other activity/ies:
Advocacy/campaigning/lobbying at local/national
level.
Building competency among patient groups.
307
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