governing board elections 2017 - iapo board... · founder & president, ipspi . contributed in...
TRANSCRIPT
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Contents
Instructions .............................................................................................................................. 3
Notes ....................................................................................................................................... 5
IAPO Governing Board ................................................................................................................ 6
Nominee Profiles ....................................................................................................................... 7
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Instructions
1. Read through these Instructions and the Notes on page 5 carefully.
2. Read through the Nominee Profiles on pages 8-34.
3. Select up to 3 (THREE) Nominees who you think should be on the Governing Board.
We recommend that you consider the following questions when deciding on your votes:
Has the applicant demonstrated patient leadership skills?
Does the applicant have the skills and experience needed to fulfil a governance role at
an international organisation??
Has the applicant demonstrated a commitment and contribution to IAPO (through
previous activities for and with IAPO)?
Please also consider which applicants’ experience would complement those already
represented on the board such as:
Representation of different disease areas or conditions
Representation of large and umbrella organizations and smaller, grassroots
organizations
Professional or volunteer experiences
Representation of developed and developing countries/regions of the world
Representation of all geographic regions
4. Place an X in the boxes next to your selected Nominees on the BALLOT PAPER.
5. Please ensure that you do not select more than 3 (THREE) boxes as this will invalidate your
BALLOT PAPER
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6. Send your BALLOT PAPER and the QUESTIONS & ANSWERS PAPER to IAPO so that it
reaches us by Friday 17 November 2017 at 16:00 (GMT).
BY EMAIL to: [email protected]
BY POST to:
Annual General Meeting 2017
IAPO
49-51 East Road
London N1 6AH
United Kingdom
We will send you a confirmation once your ballot has been received.
If you have any questions then please email: [email protected] or telephone: +44 20 7250
8280.
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Notes
All Nominees have committed:
- To attend two face-to-face meetings of the Governing Board per year (expenses reimbursed).
IAPO’s travel policy is that it will cover the cost of economy travel (by air, train or other
methods) for Board Members. IAPO aims to meet the needs of those with medical conditions
which require specific travel needs and support them on request.
- To be available for conference calls, telephone and email communications between these
meetings, both with other Governing Board Members and with IAPO staff as necessary.
- To be prepared to commit a minimum of two hours per week to IAPO.
- That they are able to use English as a working language (verbal and written).
- To ensure that their organization is in good standing and its membership fees are up to date.
The Biography and Further Information sections of the nomination form had clear maximum word
limits. Where these word limits have been exceeded the text has been cut at the end of a sentence or
natural break.
All ballot papers will be anonymous.
The THREE (3) Nominees with the most votes will gain a place on the Governing Board.
All Nominees will be informed of the Election outcome.
The three elected Board Members will be announced at the 2017 AGM on 20 November 2017.
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IAPO Governing Board
Please find below a list of the current Governing Board members, their terms and officer positions.
Name Term dates Position held
Andrew Spiegel 1st term (2016-2019) -
Androulla Eleftheriou 1st term (2016-2019) -
Hussain Jafri
1st term (2005-2009)
2nd term (2009-2012)
3rd term (2012-2015)
Stepped Down 1 year
4th term (2016-2019)
Chair Elect (2007-2009)
Chair (2009-2011)
Immediate Past Chair (2011-2013)
Treasurer (2017–2019)
Jolanta Bilińska
1st term (2009-2012) Secretary (2011-2013)
2nd term (2012-2015) Chair Elect (2013-2015)
3rd term (2015-2018) Chair (2015-2018)
Migdalia Denis 1st term (2016-2019) -
Penney Cowan 1st term (2015-2018) Secretary (2016-2018)
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Nominee Profiles
(in alphabetical order by surname)
Angela Chaves…………………………………………………………………………………………8
Rubby Chawla ………….……………………………………………………………………………10
Penney Cowan………………………………………………………………………………………13
Sita Ratna Devi………………………………………………………………………………………15
Christine Janus………………………………………………………………………………………18
Dalilah Kalla…..………………………………………………………………………………………21
Neda Milevska-Kostova…..………………………………………………………………………24
Biljana Mirceska……….……………………………………………………………………………27
Joshua Wamboga………………………….……………………………………………………….29
Tendayi Westerhof……………………………………………………………..………………….32
Durhane Wong-Rieger…………………………………………………..………………………..34
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Angela CHAVES
Position: President
Member organization: Colombian Federation of Rare Diseases
Membership type: Full member
Size: National
Country: Colombia
Website: http://www.fecoer.org/
Biography
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
Organizational development and strategic planning
Public speaking
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Further details on skills (100 words)
What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
Involvement with IAPO to date
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Rubby CHAWLA
Position: FOUNDER AND PRESIDENT
Member organization: INDIAN PATIENTS SOCIETY FOR PRIMARY
IMMUNODEFICIENCY-IPSPI
Membership type: Full member
Size: National
Country: India
Website: http://www.ipspiindia.org/
Biography
I am Founder & President of IPSPI since 2004.IPSPI is: National Member
Organization of International Patients Organization for Primary
Immunodeficiencies – IPOPI, www.ipopi.org
Partners Organization for Rare Diseases India- ORDI, www.ordindia.org
Member of Indian Organization for Rare Diseases –I-ORD, www.i-ord.org
Full member of International Alliance of Patients Organization- IAPO,
www.iapo.org.uk
Member of Indian Alliance of Patients Group - IAPG
Conducted various National Events during World PI Week (22-29 April) every
year.
Regional CME conducted at KIMS,KIIT University, Bhubaneswar, Odisha, India
in 2012
International CME conducted at KIMS,KIIT University, Bhubaneswar, Odisha,
India in 2013
National CME conducted at Apollo Hospital, Bhubaneswar, Odisha ,India in
2014.
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What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
Organizational development and strategic planning
Public speaking
Further details on skills
I am truly impressed by IAPO’s working from the day 1 when I was invited and
attended IAPO’s first South-east Asia Meeting in New Delhi in 2014.I was so
encouraged & motivated by the meeting & understanding of Universal Health
Coverage,Health for all, Patient Empowerment that I enrolled myself for PG
Diploma on Public Health & Services Management & completed it in flying
colours. Since then I have not looked back. As I have been working in the field
of Primary Immunodeficiencies for more than a decade, I am into Advocacy,
Patient empowerment & lobbying with Government for coverage of treatment
for PID patients.
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What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
Patient-centred healthcare needs to be addressed strongly globally and very
strongly in developing country India. IAPO has prominent role to play in
promoting patient-centred healthcare and accomplishment of sustainable goals
of United Nation.
Involvement with IAPO to date
I have attended & participated actively in IAPO’s first South-east Asia meeting
in New Delhi in December 2013. Selected for representing South East Asia by
IAPO in SEARO WHO meeting from 7-11 Sep.,2015 at DILI, TIMOR-
LESTE.Invitation & participation at IAPO 7th Global Patients Congress 2016 at
Selsdon Park Hotel, London from 9-11 April,2016..Presentation on ‘Innovation
in rare or stigmatized diseases and disorders and treatment’ by Rubby Chawla,
Founder & President, IPSPI . Contributed in research of Biosimilars by IAPO.
Actively advocated for the cause of PID and Universal Health Coverage,Health
for All & treatment of PID Patients since IAPO’s contact & motivation.
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Penney COWAN
Member organization: American Chronic Pain Association
Membership type: Full member
Size: National
Country: USA
Website: http://www.theacpa.org/
Biography
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
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Organizational development and strategic planning
Public speaking
Further details on skills
Month.
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What do you see as the opportunities for IAPO’s role promoting patient-centred healthcare in the next 5 years?
Involvement with IAPO to date
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Sita Ratna DEVI
Position: CEO
Member organization: Dakshayani and Amaravati Health and Education
Membership type: Full member
Size: National
Country: India
Website: www.dakshamahealth.org
Biography
Public health professional, management degree, over 25 years of experience in
the government, private sector and not for profit. Have established India
Alliance of Patient groups with over 30 member organisations. Founding
member of National NCD Alliance and the National Rare Disease Alliance.
Member of the committee leading the civil society response to multistakeholder
action plan for NCDs in India. A full member of IAPO and have participated in
several campaigns, opinion surveys and technical sessions of IAPO. I work with
government and industry in policy and advocacy for inclusion of patient voice in
dialogue at all levels.
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or
management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
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Organizational development and strategic planning
Public speaking
Further details on skills
As Board member of National NCD Alliance and member APARDO, working at
National and Regional level on advocacy for specific thematic areas. I run
media campaigns, written over 20 articles, white papers and opinion editorials
in 2017. Managed twitter and facebook campaigns for AMR, Healthy heart and
WHD celebrations. We are a virtual organisation working with volunteers, we
multitask and am adept managing accounts, book keeping and management
skills which I can easily transfer. I run a National Alliance with a mission to
increase my membership to 100. I have been approached by Bangladesh and
Mauritius to start Alliances there, working on it.
What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
IAPO is a key partner and influencer recognised globally as the representative
of patient voice. It has a collective strength of its member organisations to not
only influence policy and systems globally but also nationally, regionally and in
specific thematic areas. IAPO can also work in ideas exchange, best practice
dissemination and evidence based policy change. It can be a powerful
influencer for research in new therapies and large prevention strategies. An
important area is financing for healthcare that needs the collective strength of
IAPO. New and emerging diseases is another priority area.
Involvement with IAPO to date
Have participated and spoken in two congresses, Have marketed and raised
the profile of IAPO in India, helped increase membership by speaking to
member organisations about IAPO. Conducted and participated in PSD in India.
Participated in surveys, technical papers and resource (technical) building.
Started the Alliance in India in partnership and with support from IAPO. I use
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resources available with IAPO to work on patient empowerment. Have worked
with several board members on thematic areas- Rare Diseases etc.
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Christine JANUS
Position: CEO
Member organization: International Alliance of Dermatology Patient
Membership type: Full member
Size: International
Country: Canada
Website: https://globalskin.org/
Biography
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or
management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
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Organizational development and strategic planning
Public speaking
Further details on skills
What do you see as the opportunities for IAPO’s role promoting patient-centred healthcare in the next 5 years?
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Involvement with IAPO to date 5 May2017- World Health Assembly(WHA), I attended 2 IAPO satellite sessions
to show my support as a member. I enjoyed an informal dinner with IAPO
staff–we are lucky to have such a dedicated team!
May 6-8, 2017- I was an invited speaker at the Person-Centered
Medicines(PCM) Conference, Geneva. I was honoured to represent IAPO and
joined a PCM discussion forum. I met with WHO representatives,
and was encouraged to bring IAPO colleagues to discuss PCM further.
So, at the WHA I arranged a joint meeting for IAPO(5.23) with a key WHO
representative and was also
delighted to have IAPO’s Past-President join me in another WHO
meeting(5.24)– both where IAPO’s potential for great influence was discussed.
IADPO/Globalskin became a member in 2015, and was modelled on IAPO,
thanks to the influence of a former IAPO Board member I met at a Harvard
Patient-Initiated Research course!
2015 IAPO Congress- I was a speaker- presentation on successful Canadian
advocacy tool.
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Dalilah KALLA
Position: Secretary and Spokesperson
Member organization: Lupus Alert
Membership type: Full member
Size: National
Country: Mauritius
Website: http://www.lupusalert.com/
Biography
Lupus, the disease with a thousand faces, was unheard of in Mauritius until I
came out public with my traumatic experiences and agony of the disease.
Founder member of Lupus Alert, the only registered NGO in Mauritius that
provides support to lupus sufferers, I left no stones unturned, knocked on all
doors and succeeded in setting up a National Awareness campaign that had
mobilised public opinion and authorities about a life threatening disease.
Having successfully completed my secondary and tertiary education, I am
currently working in the Employ ability Service at the Middlesex University
Mauritius.
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or
management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
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Organizational development and strategic planning
Public speaking
Further details on skills
Some of the skills I have developed while working with Lupus Alert are:
• the ability to relate to and communicate with a range of people;
• problem-solving skills and the ability to operate effectively under
pressure;
• the ability to build and maintain effective relationships in changing
teams;
• management of both people and projects and the ability to motivate
others;
• drive and determination to achieve results and initiate action;
• self-awareness and organisational awareness;
• negotiating and liaising with public bodies and other non-governmental
organisations
• researching and writing project proposals and reports
What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
That patients are known as persons in context of their own social worlds,
listened to, informed, respected, and involved in their care—and their
wishes are honoured during their health care journey.
Helping patients to be more active in consultations changes centuries of
physician-dominated dialogues to those that engage patients as active
participants.
Involvement with IAPO to date
- April 2016: Lupus Alert is a member of IAPO
- October 2016: Lupus Alert represented IAPO at the WHO/GCM NCD
Global Dialogue held in Mauritius
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- April 2017: Lupus Alert participated in the IAPO Webinar: Tips and tools
for assessing credible health evidence.
- July 2017: African Regional Meeting held in Uganda.
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Neda MILEVSKA-KOSTOVA
Position: Executive Director
Member organization: Center for Regional Policy Research & Cooperation
'Studiorum'
Membership type: Associate member
Size: National
Country: Macedonia
Website: http://www.studiorum.org.mk/
Biography
My very diverse educational background, including pharmacy, molecular
biology and public health was essential to my understanding and fight for the
multifaceted and multicentered issues of modern day patient. My knowledge of
public policy and advocacy helped me in the fight for patients’ rights in diverse
national and regional contexts.
My work life started early, with writing on health issues for the student
newspaper. The desire to fight against injustice and unfulfilled health needs of
people brought me into the position of Executive Director of a think-tank
“Studiorum”, working on gathering evidence and using it to advocate for
patients’ rights across Europe and worldwide.
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g.
WHO, PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages Financial, such as accountancy, strategy, financial planning or management
Fundraising, such as corporate and foundation fundraising
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Legal skills
Membership strategy on a national, regional and international level
Organizational development and strategic planning
Public speaking
Further details on skills
My work in a think-tank for over 15 years was useful for me to learn and
practice negotiation, which is one of the assets I am willing to contribute with
to the further development and recognition of IAPO in the global and European
health arena. My advocacy skills have proven in action; in my country, I was
one of the initiators and devoted fighters for the Law for patients’ rights, which
is now endorsed and implemented in practice since 2008.
I have extensive experience in fundraising from diverse donors, including EU,
USAID, UNICEF, WHO, and so forth.
Over the past 15 years of my work in
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What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
− STRENGTH IS IN UNITY. Allying with other patients’ umbrella
organisations on specific issues of interest to patients, as well as with
professional umbrella organisations for targeted actions on specific topics of
interest to particular member organisations of IAPO.
− SUPPORT TO EVERY MEMBER IN NATIONAL EFFORTS. Relevance of
our work at global level is very much dependent on the successes of member
organisations at national and local levels. IAPO supporting its member-
organisations in their efforts on national level, with expertise, presence at
advocacy meetings in the countries, can very much contribute to its relevance
and recognition.
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At the same time, it will boost national efforts and give more international
dimension and recognition to the member organisations in achieving patient-
centred healthcare for their constituencies.
− JOINT SUCCESS COMES FROM EVERYONE. Building partnerships is
essential to getting stronger voice as civil society. IAPO should facilitate and
enable creation of partnerships among its member organisations, and support
these partnerships with expertise and resources.
− FUNDRAISING FOR JOINT ACTIONS. IAPO as alliance of over 270
organisations from 71 countries hold a very strong power and voice of many
patients worldwide. Its credibility and recognition can be instrumental in
fundraising for joint actions within the IAPO but as well with interested
individual member organisations. IAPO’s strength is in the membership, and
member organisations’ strength at international level is in IAPO membership
Involvement with IAPO to date
I joined IAPO and worked for its goals at national level through our
organisation Studiorum introducing it to other organisations and advocating
their membership; at regional level, I represented IAPO at the WHO Regional
committee for Europe, and other occasions and advocacy and scientific
conferences. Also, I contributed to several of IAPO’s policy briefs.
I attended IAPO’s events whenever possible, including 2 IAPO Global
congresses (in 2006 and 2012), and was very much inspired by the
enthusiasm and power of its members when coming together. I want to
contribute more to keeping the momentum.
Attended IAPO Global congresses in 2006 (Barcelona, Spain) and 2012
(London, UK) Represented IAPO at the 63rd WHO Regional Committee for
Europe, 2013, Izmir, Turkey
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Biljana MIRCESKA
Position: President and Founder
Member organization: NGO Slap - Save Liver Association of Patients
Membership type: Full member
Size: Regional
Country: Macedonia
Website: N/A
Biography
General Manager 01/02/2016 - present at NGO SLAP
− implementation of the policy of the association
− Advocacy and coordinating the work of the association
− Communication and patient care
− Complete development and implementation of projects (education,
testing, hiring new members...)
− Communication and negotiation with the authorities
General Manager (01/09/2009 – 1/11/2015) at NGO HEPTA -Association for
health education, prevention and better treatment, Skopje
- Making projects / Full implementation of projects (organization, project
activities, research reports)/Maintenance of lectures / -Testing / Relationship
and care for patients / Public Relations (Media) /Negotiations with the
competent institutions / Cooperation with other organizations.
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
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Financial, such as accountancy, strategy, financial planning or
management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
Organizational development and strategic planning
Public speaking
Further details on skills
I have worked 2 years as a journalist in a local TV as editor of a healthcare
programme. Also have published a book and I think that public speaking and
good text for news on media have a crucial importance for one message to be
wide spread and to get in touch with the audience. On the campaign organizing
for hepatitis in Macedonia, the message have arrived to the government and
the result of that campaign was putting the drugs for hepatitis on positive list.
That was a huge success. Also I have finished accounting course.
What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
1, Policy makers and regulators should include patient-centred care as a
dimension of quality in its own right in strategic and other policy
documentation.
2, Collection and reporting of patient care experience data through quantitative
patient surveys and qualitative, narrative-based sources.
3, Focus on work environment, work culture and satisfaction of staff as an
integral strategy for improving patient-centred care.
These are only a few ideas.
Involvement with IAPO to date
Till today we are only have answered on some Surveys. We have no chance to
be more involved or we don,t know how can we do that. Anyway we hope to
have more cooperation in the future.
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Joshua WAMBOGA
Member organization: Uganda Alliance of Patients ‘Organizations (UAPO)
Membership type: Full member
Size: National
Country: Uganda
Website: http://www.ugandapatientsorganizations.org/
Biography
I have been a board member and Chair Elect at IAPO until August 2017. I
served as board member at Uganda country coordinating mechanism for global
fund until June 2017. I serve as an expert review committee member at Access
to medicine Index foundation-Netherlands that assesses performance of
Pharmaceutical industries annually. I am also a Committee member of TWG for
WHO stop TB partnership-Working group on new drugs and Committee
member of Health technology assessment international (HTAI) - (PCISG).
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of relevance to patients or of a particular policy-related organization (e.g. WHO, PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key messages
Financial, such as accountancy, strategy, financial planning or management
Fundraising, such as corporate and foundation fundraising
Legal skills
Membership strategy on a national, regional and international level
Organizational development and strategic planning
Public speaking
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Further details on skills
Over a period of time, I have gained skills in board Governance & Management
of NGO’s; I come to IAPO with skills in over sight of Finance & Accounting,
Audit & Risk management plus membership recruitment, Policy Development
and Strategy & Planning skills for a growing NGO. I have Passion and
emotional commitment about the purpose of IAPO coupled with first hand &
experience & understanding of Africa Patients challenges such raising cases of
NCDs, Access to Medicine & health financing. I am dependable and engaged in
patients’ wellbeing. Over time, I have gained Strong program performance
skills with great focus on ensuring adequate resources to achieve organisation
goals.
What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
1. IAPO to take a leading role in mobilising and setting up Africa region
patient’s network to strengthen response to UHC and health financing.
2. Global Resilient health system strengthening for UHC and Global Health
financing vs Patient cantered health services
3. African Medicines Agency that will ensure that all medicines available on
the African markets are safe, effective and of high quality (I am currently
involved in creating East Africa patients network)
4. Growing global need for Research & innovation to inform UHC
interventions in public & humanitarian work vs PC
5. Policy & Regulation for high impact access for UHC and patient cantered
health services
6. Effective communication for patient centred health services and UHC
Involvement with IAPO to date
1.Participated in organising and attending the IAPO African Regional meeting in
Entebbe in Uganda 4-5 July 2017. The meeting helped NEPAD and the AMA to
take note of the patient-voice include its perspective in regulatory
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harmonisation for establishment of AMA. IAPO Africa bio therapeutics advocacy
group was formed to champion patient’s voice in AMA
2.Represented IAPO at WHO AFRO sixth session meeting of the AFRO Regional
Committee (RC66) Meeting from August 19–23, 2016 at the United Nations
Conference Centre (UNCC) in Addis Ababa, Ethiopia. Adoption of several
patient centred resolution including palliative in financing frame work
3.Attended and participated in IAPO7th global congress 9-11 April 2016 in
London leading to production ultimate IAPO document to inform strategic
direction
4.Participated in board and committee meetings; fundraising and audit
committees-providing over sight leadership to IAPO program and policy
implementation including institutional strengthening
5.Represented IAPO at WHA on 23th May 2017, Geneva-presenting displaced
people with chronic disease
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Tendayi WESTERHOF
Member organization: Pan African Positive Women’s Coalition-Zimbabwe
Membership type: Full member
Size: Local
Country: Zimbabwe
Website: http://www.papwc.org/
Biography
Tendayi Westerhof holds a diploma in Executive Business Leadership from the
Zimbabwe Institute of Management and another in Biblical Studies and
Christian Leadership from the Africa Multination for Christ College (AMFCC),
Affiliated to Friends. She has taken up several leadership roles which includes
the Zimbabwe Country Coordinating Mechanism for the Global Fund as an
alternate member where she represented networks of people living with HIV.
A former chairperson of Zimbabwe AIDS Network, Harare Province and served
on the ZAN National Governance Board. She has served on the International
Steering Group of the International Treatment Preparedness Coalition (ITPC)
were she represented Southern Africa.
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What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or
management
Fundraising, such as corporate and foundation fundraising
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Legal skills
Membership strategy on a national, regional and international level
Organizational development and strategic planning
Public speaking
Further details on skills
I would promote the visibility of IAPO through public relations and media. I am
an experienced public speaker on patient-centred health care. I would also
help IAPO in fundraising and introduce a fund-raising strategy called champions
of patient-care. These will be individuals selected from the IAPO membership
who will be involved in public speaking and fund-raising for IAPO. I am
experienced with strategic planning development and to ensure that IAPO will
continue to align with the current developments such as the sustainable
development goals and universal targets. For the African region, as a board
member I will ensure a link, with the African Union.
[Text cut as it exceeded the word limit]
What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
IAPO has opportunity to capacity build its members in advocacy towards
patient-centred health care at community level, national and regional level and
to ensure that new sustainable development goals around healthcare are
operationalized.
Involvement with IAPO to date
I have experience with the work of IAPO in the past as I have attended their
regional workshops in Uganda in 2010, and IAPO Congresses in Budapest and
Istanbul in 2008 and 2010 respectively. I have participated a few surveys and
served in the organizing committee of IAOP Patient Congress in 2010. Have
just re-joined IAPO after a few years break and hope to get more involved in
IAPO events.
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Durhane WONG-RIEGER
Member organization: Consumer Advocare Network
Membership type: Full member
Size: National
Country: Canada
Website: http://www.consumeradvocare.org/
Biography
Durhane is a patient advocate, has two children with rare disorders, and PhD in
psychology. She is Chair of Consumer Advocare Network (patient engagement
in healthcare policy and advocacy), President of Canadian Organization for
Rare Disorders, CEO of Institute for Optimizing Health Outcomes (providing
health coaching and patient self-management) and Chair of Canadian Heart
Patient Alliance.
Internationally, Durhane is Chair of Rare Disease International (global patient
organization alliance), on The Patient- Patient Centred Outcomes Research
Editorial Board, on ISPOR Patient Representatives Roundtable and on HTAi
Patient /Citizen Involvement Interest Group. She is past-Chair of IAPO and
past-Board of DIA International.
What particular skills or expertise could you bring to IAPO’s Governing
Board?
Advocacy and policy, such as expertise on particular policy issues of
relevance to patients or of a particular policy-related organization (e.g. WHO,
PAHO, EU and UN etc)
Communications, such as strategy, media, identity, communicating key
messages
Financial, such as accountancy, strategy, financial planning or
management
Fundraising, such as corporate and foundation fundraising
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Legal skills
Membership strategy on a national, regional and international level
Organizational development and strategic planning
Public speaking
Further details on skills
I have two children with rare disorders and a husband with cardiovascular
disease, Parkinson’s, and a motility disorder and have advocated for diagnosis,
care, and treatment. I helped lead the fight on behalf of Canadians infected
with tainted blood and currently lead advocacy for Canada’s orphan drug
regulations, rare disease drug funding, and Rare Disease Strategy. I have
developed toolkits on health coaching, biosimilars, partnerships, advocacy, and
health technology assessment and provide training to patient groups around
the world. I collaborate with international patient organizations and currently,
as Chair of Rare Disease International, am working on global rare disease
policy.
What do you see as the opportunities for IAPO’s role promoting
patient-centred healthcare in the next 5 years?
Patient-centred care, as a concept, has become well accepted by many of the
health stakeholders, including governments, review agencies, industry and
healthcare providers. Now is the time for patient organizations to take a lead
in moving more deliberately to ensure that patients are prepared to take
advantage of opportunities and to push for genuine participation. IAPO has the
potential to lead the development of patient advocates and patient
organizations in training and preparation. At the same time, IAPO has a
favoured role in the WHO and United Nations Economic and Social
Development Committee to advance the patient role in established agencies
and institutions and to create patient engagement in various programs.
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Involvement with IAPO to date
I have attended every IAPO conference since 2006 and have served on the
board since 2008. I was chair for one term, which included Chair-elect and
Past-Chair. I have conducted training workshops with IAPO in Latin America,
Asian and Africa from 2008 to 2015. I have also collaborated on the
development of training materials on patient partnerships, biosimilars, and
advocacy, starting with the partnership project in 2010, first biosimilars toolkit
in 2013, and second biosimilars toolkit and advocacy toolkit in 2017. I continue
to participate in IAPO-sponsored activities, including WHO meetings and
partner events, including the most recent WHO side meeting in 2017.