Challenges in achieving quality in healthcare Chair Dr Sophie Staniszewska, Warwick Medical School, Speakers Obatunde Oladapo, PLAN Health Advocacy and Development Foundation, Nigeria Carlos Sanchez Castro, Ale Associacion, Private Assistance Institution, Mexico Stephanie Miller, Health Care Consumers Alliance of South Australia @IAPOtweets

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Session Outline This session will explore: • What quality means in different settings, does this vary from country to country? • What the different components of quality are indifferent healthcare settings • How quality is operationalised at the country level and what more needs to be done

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Obatunde Oladapo

Executive Director: PLAN Foundation Tuesday, April 08, 2014 National Coordinator: TAM – Nigeria

Quality from the patients’ perspective Being presentation delivered at the Global Patients’ Congress of the International Alliance of Patients Organizations (IAPO), London, UK March 29 – 31, 2014

Tuesday, April 08, 2014

Outline

Tuesday, April 08, 2014

About PLAN Foundation and TAM Defining quality in the Nigerian context The key aspects of quality

How quality is operationalized in Nigeria

Tuesday, April 08, 2014

About PLAN Foundation PLAN Health Advocacy and

Development Foundation (PLAN Foundation) is a PLHIV-led nongovernmental, membership organization based in Ibadan, Oyo State, Nigeria. PLAN Foundation is an IAPO member Tuesday, April 08, 2014

About TAM Treatment Action Movement (TAM)

is a civil society movement spearheading activities on access to care and treatment on HIV/AIDS, tuberculosis, malaria and other related infectious diseases in Nigeria since 2003

Tuesday, April 08, 2014

Defining quality in the Nigerian context Tuesday, April 08, 2014

 As leaders of patients’ organizations and

treatment activists the term “quality” is determined by not only the superiority or otherwise of healthcare products or services but also by whether they meet the needs as well as expectations of the consumers of the products or services (the patients).  For us, in any scenario, including provision of healthcare products and services, the customer is THE KING! He calls the shots!

Tuesday, April 08, 2014

The key aspects of quality Tuesday, April 08, 2014

TAM views the key aspects of quality from the patients/treatment activists perspective as defined by the 5 ‘A’s of treatment access:  Availability;  Accessibility;  Acceptability;  Affordability; and  Accountability; Tuesday, April 08, 2014

availability  Availability refers to whether the

products or services exist or not; whether they are procured and distributed; and whether the right logistics are put in place to ensure that the products and services are delivered to where they are needed and when they are needed too.

Tuesday, April 08, 2014

accessibility

 Accessibility refers to how easy it is for the

consumers to gain access to the products or services with minimal encumbrances.  Barriers may be due to the distance or physical terrain that the patient experiences in order to access the health products and services  These include physical and institutional barriers to access in terms of reasonable accommodation for persons with disabilities, consideration for most-atrisk populations, including barriers due to sexual orientation. Tuesday, April 08, 2014

acceptability

 Acceptability refers to how the patients view the

products or services and whether they would freely want to access the services based on their views.  For example, acceptability of drugs may depend on the packaging, physical presentation, taste, pill burden, how convenient the drugs are to take, information on the drug literature, et cetera  For example, acceptability of health services may depend on location, healthcare workers attitudes, convenience for ‘special’ populations without stigma Tuesday, April 08, 2014

affordability

 Affordability refers to the cost of the products or

services to the patients.  These also include incidental or hidden costs even when the products are provided with zero user fees.  Other costs that determine the affordability of health products and services may include cost of transportation to access the products/services and costs of other related products/services

Tuesday, April 08, 2014

accountability

 Accountability refers to the consideration for

transparency and fairness in the procurement and provision of the products or services.  For example, patients want to know if the amount of money used to procure drugs for treatment of 2,000 MDR-TB patients could have treated 5,000  This also includes ensuring that the right priorities are set in investing money for treating the people. For example we need to compare how much is spent on overheads compared to how much is spent on providing products and services for consumers. Tuesday, April 08, 2014

How quality is operationalized in Nigeria Tuesday, April 08, 2014

 As leaders of patients and treatment activists

organizations, we owe it a duty to the people to act decisively, strategically and proactively in ensuring that the quality of health products and services are not compromised. This is why TAM, NEPWHAN, PLAN Foundation and other concerned Nigerians worked together in addressing quality concerns about an ARV product being provided in ART clinics as well as delivery of ART services in the country.

Tuesday, April 08, 2014

Comparing qualities

Tuesday, April 08, 2014

What did we do?  Press Conference was held by TAM and other

stakeholders.  Letter was written to the Health Minister  Meeting held with Chairman, Senate Health Committee  Letters written to NAFDAC on TAM’s observations.  Strong activism during ICASA 2013 in Cape Town Tuesday, April 08, 2014

Press conference

Tuesday, April 08, 2014

Cape Town action

Tuesday, April 08, 2014

Ibadan protest

Tuesday, April 08, 2014

What did we achieve?  Meeting of Nigerian stakeholders (patients, activists,

government, partners and other stakeholders held in Cape Town to discuss TAM’s observations  Succeeded in getting Minister of Health to call stakeholders meeting in Nigeria  Samples of the drugs tested by TAM through US FDA to determine the quality of the drug’s chemical components  Meeting held with the producers of the controversial drug  Agreement made with the producers on measures to improve the quality of the drugs.

Tuesday, April 08, 2014

Whatever is conceivable is achievable!

Thanks for listening! Tuesday, April 08, 2014

Quality in Mexico’s Health System

Asociación ALE, I.A.P.

Alejandro Alverde Castro

Was founded on November 2004 by the Alverde Castro and Castro Careaga families upon the death of ALE, son of Luis Eduardo Alverde y Adriana Castro, and the extraordinary experience, in the middle of great pain, of donating his organs to other people and the awakening of the reality of a very poor system for transplant medicine and organ donation in Mexico.

Objetives • Provide social and financial assistance to transplant poor people that do not have medical coverage. • Establish in Mexico organ donor culture. • Invest in medical and human infrastructure for the establishment of transplant medicine.

• Influence on public policies (Advocacy).

Operative Offices Tucson Torreón La Paz, BCS.

Tamaulipas

Los Mochis Mazatlán

Colima

Querétaro

DF

Summary of Operative Work  700 Organ and tissue transplants (Funding).

 3,100 cataract surgeries (Funding).  33,000 persons have been tested in Kidney disease prevention campaign's.

 5 Hemodialysis Clinics: Villahermosa, Querétaro, Torreón, Los Mochis y Distrito Federal (Funding).  4 Eye Banks: Aguascalientes, Querétaro, Torreón y Los Mochis (Funding).  12 scholarships to Health professional's in Spain.

Mexico’s Health System

Understanding the Problem…

Mexico’s Health System: (Fragmentation) Coverage in different systems: IMSS: 52 millions (business employees) ISSSTE: 11 millions (Federal government employees) Seguro Popular: 50 millions (Open Population) Local ISSSTE´s, 1 million (Local State’s employees) PEMEX, SEDENA, SEDEMA 1.5 millions (Military & Oil)

Total: 114.5 millions people Apparently we have Universal Health Coverage ... NOT SO, Seguro Popular (Open Population) does not cover many of the chronic diseases, and funding goes to the 32 state’s governments, each of them have their own priorities and operational procedures. (More fragmentation).

Health System: (Lack of Funding) México invests 6% of PIB in Health is the lowest of OCDE members. (2011 Report). 987 USD health expenditure per capita (OCDE 2011 Report). Mexicans spend 50% out of pocket for health. OCDE 2011.

Although its a Constitutional Right we don’t invest enough in Health.

Our actual system is not the best to gain eficiency, equity or quality. Empleadores (Incluye gobierno federal y estatal)

Gobierno Estatal

Seguro CNSPSS Popular

Privado

Seguridad Social

REPSS SESA INS

IMSS oportunidades

IMSS

Ejercito y Marina

ISSSTEs estatales

Servicios privados

ISSSTE federal

PEMEX

Provisión Fuente: Aguilera (2010)

Gobierno Federal

Seguro Privado

OACS

Financiamiento

Hogares

Público

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Complexity Problems: Quality Issues  36 Different Health Systems or Public Providers.  Lack of Funding.  Lack of Infrastructure at Regional Levels.  Lack of Medical Guidelines.  Savings the word that bureaucratic managers use (Medications

Budget).  Lack of participation of patients.  Lack of Oversight by Regulatory Bodies.

 Rules and Regulations to complex for approval of new Medicine.

ALL OF THIS GENERATES:  Insufficient Services and Quality of them.

 Availability of Quality Medicines.

Conclusions From this problems we emphasizes in the following : High mortality rates in some diseases. 60% of population live in poverty. 56% without social security.

But most of all:

Lack of Health Coverage and Quality of Services with great disparities.

¿What to do? (ALE’s Work…) Advocacy…

Objectives and Action Plan WHAT

HOW: Advocacy

 Universal Health Coverage (OMS) Recommendation.

1.  Reform LGS (Mexican Health Law) Rights for Mexican Population to Decide What Provider to Use.  Include in First Medical Contact Program (CAUSES) Kidney Disease Prevention.  Improve Quality of Services and Medicines.

2.

3. 4.

5.

Feasibility Study of Budget Needs and Its Impact on Mexican People. Lobby in Mexican Congress for Law Reform and Budget to cover our Proposal. Organize and Mobilize Patient Groups. Educate Doctors and Patients to Report Adverse Medical Events Campaign Medical Vigilante

Advocacy Plan

Evaluate its Influence

Obtain Budget Appropriation

Empower Patients

•STAKEHOLDERS •Consejo de Salubridad General. • Seguro Popular. •Secretaría de Salud. •State Governors. •Presidencia de la República.

Multiplicar Get their el mensaje Endorsement

Establish an Strategy for participation

(Target) Persuade Stakeholders with evidence Inform all progress Provide Statistical Support for Financial Needs

Be prepared for opposition

Campaign Medical Vigilante Objectives: • • •

Promote the existence of adverse events tool in ALE website. Educate patients and doctors in the use of the tool. Obtain the approval of Mexican Sanitary Regulators in the use of the tools and present reports of the results.

TACTICS: - USE OF SOCIAL MEDIA - PROMOTE ALLIANCE WITH OTHER PATIENT ORGANIZATIONS

Campaign Medical Vigilante

Campaign Medical Vigilante FORMULARIO (botón)

Report of Adverse Events: Pharmacovigilance In our website we have a tool for doctors and patients to report adverse events.

Communication: Social Media - We

will be very active in Social Media Channels (Facebook / Twitter/Google+). - We will ask our followers to promote this initiative.

Empower Patients: Mobilization We organized patient groups, giving them information and voice, inviting them to fight for their rights in a constructive manner. Each month we have a patients meeting in different States of Mexico. Topics in the agenda: Nutrition, Patient Rights and Thanatology.

Awareness and Proposal: World Kidney Day 2013

On March 14, we presented a position document of our vision and a proposal with respect of kidney disease in Mexico to the Minister of Health.

Dra. Mercedes Juan, Minister of Health

Advocacy: Lobbying in Congress

Communication: Media Coverage

Communication: Networking

Vivir es Compartir @AleAsociacion Vivir es Compartir

Love for the living…

It’s forbidden not to do anything for patients that are waiting for a health treatment to keep them active and alive…

¡Muchas Gracias…….!

Challenges in achieving quality healthcare Stephanie Miller Executive Director Health Consumers Alliance of South Australia

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Who is HCA? Vision: Consumers at the heart of health care

Mission: A strong and effective voice for the promotion and protection of health consumer wellbeing and rights

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Strategic Directions 2012-16 

Health equity and rights 



Policy leadership and systemic advocacy 



We lead health consumer and community engagement and collaboration.

Organisational strength and innovation 

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We are policy leaders and provide systemic advocacy to inform, shape and sustain consumer centred care.

Engagement and partnerships 



We work with health consumers, communities and other stakeholders to promote health equity and rights.

We develop the people, culture, systems and resources to be an effective and thriving organisation.

Health and total spending: trends

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AIHW 2012. Australia's health 2012. Australia's health no. 13. Cat. no. AUS 156. Canberra: AIHW.

Sources of health funding, 2009–10

AIHW 2012. Australia's health 2012. 58 Australia's health no. 13. Cat. no. AUS 156. Canberra: AIHW.

Australian Safety and Quality Framework for Health Care 

Safe, high quality care is always:



Consumer centred  







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Providing care that is easy for patients to get when they need it Making sure that healthcare staff respect and respond to patient choices, needs and values Forming partnerships between patients, their family, carers and healthcare providers

Driven by information 

Using up to date knowledge and evidence to guide decisions about care



Safety & quality data are collected, analysed and fed back for improvement



Taking action to improve patient experiences

Organized for safety 

Making safety a central feature of how healthcare facilities are run, how staff work and how funding is organised

National Safety and Quality Health Service Standards 1.

Governance for Safety and Quality in Health Service Organisations

2.

Partnering with Consumers

3.

Preventing and Controlling Healthcare Associated Infections

4.

Medication Safety

5.

Patient Identification and Procedure Matching

6.

Clinical Handover

7.

Blood and Blood Products

8.

Preventing and Managing Pressure Injuries

9.

Recognising and Responding to Clinical Deterioration in Acute Health Care

10.

Preventing Falls and Harm from Falls

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Partnering with Consumers  



Australian National Safety and Quality Goals for Health Care Goal 3: Partnering with Consumers  That there are effective partnerships between consumers and healthcare providers and organisations at all levels of healthcare provision, planning, and evaluation Key outcomes    

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Consumers are empowered to manage their own condition, as clinically appropriate and desired Consumers and healthcare providers understand each other when communicating about care and treatment Healthcare organisations are health literate organisations Consumers are involved in a meaningful way in the governance of healthcare organisations

Partnering with Consumers 

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Key principle: 

Improving the health service by…



… using the knowledge, skills and experience of …



… people who are using, have used or may use the health service

Three criteria 1.

Consumer partnership in service planning 

2.

Consumer partnership in designing care 

3.

Consumers and/or carers are supported by the health service organisation to actively participate in the improvement of the patient experience and patients health outcomes

Consumer partnership in service measurement and evaluation 

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Governance structures are in place to form partnerships with consumers and/or carers

Consumers and/or carers receive information on the health service organisation’s performance and contribute to the ongoing monitoring, measurement and evaluation of performance for continuous quality

Measuring what matters to patients Two key elements of quality reflected in Australian policy frameworks and standards:  Technical/physiological outcomes of the treatment or intervention  Patient experience of care processes/events that occur during episode of care

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Changing Practices is Not Enough

“It’s not what we do, but how we do it, treating patients with dignity and respect.” - Jane Cummings, Chief Nursing Officer for England 65

Different world views 

Consumers relate to health care on a deeply personal basis



Professionals relate to health care on a professional level “Consumers & their carers are the only people that have experienced their whole journey as a patient. Providers are the visitors in their lives.” Susan Frampton, CEO, Planetree

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Key Challenges: Culture eats Strategy   

 





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Health system has evolved as a practitioner-led system Dominated by the medical model of health and wellbeing Not a “low risk” activity – trust me, I’m a doctor, nurse, bureaucrat is no longer persuasive Quality is about the experience or aesthetics of care Patient or consumer centred system requires a radically different culture of care Transparency and openness to other world views is critical for safety, quality and sustainability True partnership, shared decision-making and flipping the balance of power

Turning health care on its head

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Turning health care on its head

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The Partnering Challenge 











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Working with complex or intractable issues requires a different way of operating for sustainable change Significant evidence that partnering is finding solutions to challenges on the “too hard basket” Create transformational change and innovation and greater impact than working alone Partnering is not easy – lack of clarity around value, readiness, skills, organisational capability Understanding the partnering continuum – three levels: Sponsorship, Transaction and Integration Nature of relationship from vertical to horizontal

Co-creation and co-design 

 

    



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Integration – partners co-create/co-design solutions around shared goals or a common issue Enhance one another’s capacity High levels of trust Working side by side Equity in decision-making Requires a readiness for disruptive engagement The outcome is not known, high degree of uncertainty Partners are vulnerable, prepared to take risks and suspend judgement, lose “territory” NO PLACE FOR EGOS!

Disruptive Engagement Every day we experience the uncertainty, risks, and emotional exposure that define what it means to be vulnerable, or to dare greatly. Most people and organizations can't stand the uncertainty that comes with vulnerability. Yet, during times of change and struggle we are vulnerable. We must be vulnerable. A daring greatly culture is a culture of honest, constructive and engaged feedback. Without feedback there can be no transformative change. Vulnerability is at the heart of the feedback process. Brene Brown: Daring Greatly 72

Health consumer advocacy 



Is “speaking, acting or writing with minimal conflict of interest to support a health consumer or group's wellbeing, and to promote, protect and defend their right to accessible, safe, quality healthcare.” Key values include: •

• • •

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independence loyalty promotion and protection of consumer wellbeing and rights absence of conflicts of interest. Source: Health Consumers Queensland

Patient or Consumer Leadership 





 

 



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Francis Inquiry into failings at Mid-Staffordshire highlighted the need for independent patient leadership to support quality improvement in health care What sort of patient leaders do we want as a movement? Comfortable with ambiguity – able to work with the tension between independence and integration Lean into to discomfort of uncertainty and vulnerability Bold and take risks, prepared to be unpopular Attentive, objective and focussed on outcomes Not working alone; collectively and collaboratively with peers and with support of patient organisations Strong patient organisations with capacity for integrated partnering

Hope Patient activists have to work by persuasion and influence. To do that they have to affect the moral and ethical sensibilities of professionals…so that they no longer accept some policies, practices and standards…in spite of the benefits of emancipation to other interest holders…emancipation is a long and hard journey. Recognised emancipation movements show us this. So to do the last 50 years of radical patient activism…But it is a journey of hope, the hope of making healthcare better for everyone. Charlotte Williamson, Towards the emancipation of patients: Patients’ Experience and the Patient Movement, 2010

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E: [email protected] P: 08 8231 4169 W: www.hcasa.asn.au T: https://twitter.com/HealthConsumers FB: https://www.facebook.com/pages/Health-Consumers-Alliance-of-SAInc/144504569051463

Discussion points • What does quality of care mean to you? • How is it similar/dissimilar to the examples we have heard? • What are the key components of quality? • How to do you apply or use the definition of quality in your country setting?

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Contact Us Please visit our website to find out more: www.patientsorganizations.org Tel: +44 20 7250 8280 Fax: +44 20 7250 8285 Email: [email protected] www.facebook.com/internationalallianceofpatientsorganizations @IAPOtweets

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