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Written from my sick bed – After GHF2014 – a very personal account of patient centred healthcare

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This post is NOT about TB and yet is relevant for everyone who cares about leading a healthy, pain-free life.

I had the fortune to attend GHF 2014 in March in Geneva to present JATB and what we have done through it towards better care for people infected and affected by TB.  It was received well.  However, the reason for this post has nothing to do with my session there.  It has to do with a session I attended called ‘Integrated Care, Empowered People’.

On a deliciously cold morning in one of the world’s most beautiful cities, ensconced in a warm, beautifully appointed auditorium, I heard out speakers who spoke about patient-centred healthcare.  They were all passionate about the concept.  As I listened, it struck only a mild chord in me because I had only occasionally needed healthcare, albeit for minor self-limiting health issues such as cold or fever or stomach upsets. On that day, it seemed desirable, but not something that could make or break life.  That was till I returned to India and developed a health problem that changed my whole perspective of patient-centred healthcare.

While I will spare the reader graphic details of my health issue, suffice it to say I needed MINOR surgery for a painful anal fissure.  My doctor, who I have great regard for, assured me it would just need two days of rest, better eating habits and I would be on my feet in next to no time.

Today, more than two weeks after my surgery, lying in bed, alternating between periods of intense pain and fatigue from the pain, I listen to my continuously beeping phone. It reminds me that I have dozens of unreplied mails; I have not returned to work yet, and try as I will, I neither have the energy nor the will to do anything about it.  And the situation is because of an entirely avoidable mistake by the nursing staff at the hospital who did not handle my discharge in the patient-centred way that it should have.

The mistake was as minor as the surgery itself but it has cost me dearly in the kind of pain that I have had to suffer, the number of days that I as a person who loves my job, loves the energy that my life normally has, loves LIFE itself to the core, have lost, and the needless suffering it has caused to my family who have watched my agony helplessly, unable to do anything.  My recuperative period, which should have been mildly painful, has turned out to be a period filled with white-hot pain that has had me gasping and almost unconscious at times.  I am at most times a reserved, almost reclusive person, who does not show emotion easily. But pain has brought out the worst in me and has had me crying and screaming, leaving me wondering how little I have actually worked at training myself for adversity.

I thank Dr Slim Slama, Dr Sunoor Varma and the team at GHF who introduced the concept of patient-centred healthcare to me.  I also ask the nurse who caused this situation in my life:

1. Did she see me as a person or a body part?

2. Did she realise that not following doctor’s instructions to the letter could possibly lead to disaster?

3. What kind of rigour do hospitals train their staff with?  How many in the medical fraternity have heard of patient-centric care?

4. Am I just a statistic to the medical fraternity, or a person whose nerve endings can and do signal pain in a very violent way to my brain and drive it insane in that period?

5. How many like me?

6. I have voice and intend to use it in the future through JATB as well as other forums to advocate even for people who have MINOR health situations, but how many like me have voice?

7. Even as I write this, how many more are being sacrificed at the altar of healthcare facilities that are not patient-centred?

This is all the energy that I have for today.  But tomorrow is another day.  I know I will get well and I do hope that my voice will be stronger and the pain and suffering I have undergone will soon be just memories that give me more strength for better advocacy.

I have also kept all names, details and locations out of this post because it is not my intention to point an accusatory finger at any person or facility.  It is just to sound a gentle alarm in the medical fraternity that while I have the ability to talk about what has happened to me, there are scores, or more who suffer silently, unable to speak. Unless the medical fraternity listens to the voice of the patient, and goes beyond the body part, all efforts at better healthcare will come to nought.

Bharathi Ghanashyam

Written by JournalistsAgainstTB

July 3, 2014 at 11:21 am

Tuberculosis control needs a complete and patient-centric solution

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Madhukar Pai, Prashant Yadav and Ravi Anupindi,  McGill International TB Centre, Montreal & Stephen M. Ross School of Business, University of Michigan, Ann Arbor

Whether it is mobile phone service or vacation travel, good businesses know that success depends on providing a complete and customer-centric solution. Should patients with tuberculosis not be offered a complete solution that is patient-centered? After all, millions are affected and a large market at the base-of-the-pyramid (BoP) remains unserved.

A complete and patient-centric solution will not only include care that meets the International Standards for Tuberculosis Care, but also be delivered with dignity and compassion, grounded in the reality of patients’ lives as they navigate the long pathway from symptoms to cure. Such solution-based innovation requires a systems-thinking approach that must place patients at the center of design strategies, recognize their clinical and psycho-social needs, and be cost-effective.

Pai A patient with drug-resistant tuberculosis in India [Photo credit: Bijoyeta Das (]

Because tuberculosis requires long-term treatment and involves many actors in the value chain, there needs to be an entity which, with appropriate financial support from external agencies, can orchestrate a complete solution that is affordable and locally accessible for patients.

Are tuberculosis patients in high burden countries currently getting such a patient-centric solution? Let us consider India, which accounts for quarter of all tuberculosis cases in the world. Whether patients in India seek care in the public or the private sector, they struggle to get a complete solution.

While the Revised National Tuberculosis Control Programme (RNTCP) has done well to reach scale and provide free diagnosis and treatment for patients with drug-sensitive disease in the public sector, the programme falls short in making sure that all patients get screened for drug-resistance and in ensuring adequate therapy for all patients with multidrug-resistant (MDR-TB) and extensively drug-resistant tuberculosis. Of the estimated 64,000 cases of MDR-TB in 2012, only 17,373 cases were diagnosed under the RNTCP.

The diagnostic infrastructure in the public sector relies primarily on sputum smear microscopy that cannot detect drug resistance. It is only when patients fail to get better on standard treatment, or have recurrence of tuberculosis, that they get screened for MDR-TB, resulting in morbidity, continued transmission, and movement of patients from the public to the private sector.

Recognizing these problems, the RNTCP is actively scaling-up capacity to diagnose and treat MDR-TB. If adequately funded and successful, these initiatives should improve patient experience in the public sector.

But the stark reality of tuberculosis in India is that 50% of all cases are managed in the private sector, where the quality of tuberculosis care is suboptimal with inaccurate diagnosis, non-standard drug prescriptions, and limited effort to ensure treatment adherence. Also, private practitioners often do not screen for drug-resistance and empirical antibiotic abuse is rampant. All this means drug resistance can emerge or worsen, with poor outcomes. Lastly, out-of-pocket expenditure in the private sector can be catastrophic.

Are there examples of initiatives that address the above systemic problems? Operation ASHA is a non-governmental organization that extends the RNTCP model, and uses public sector diagnostics and drugs, to orchestrate a solution by establishing community-based treatment centers and ensuring adherence using local community providers and partners. It also leverages biometrics to increase efficiency and effectiveness. It relies on donors and the public sector for funding. This social enterprise model, however, does not offer a solution to patients who seek care in the private sector.

World Health Partners (WHP) is a donor-supported social marketing and social franchising model that delivers affordable reproductive and primary care (including tuberculosis) in underserved rural areas, by leveraging local entrepreneurs and informal providers, and by connecting them to the formal sector and specialists via telemedicine.

Initiative for Promoting Affordable, Quality TB tests (IPAQT), a coalition of more than 60 private laboratories, supported by non-profits like the Clinton Health Access Initiative, has increased the availability and affordability of WHO-endorsed tuberculosis tests. Although IPAQT is addressing the problem of suboptimal diagnosis, it does not cover treatment.

RNTCP recently announced “universal access to quality diagnosis and treatment for all tuberculosis patients in the community” as its goal in the new National Strategic Plan. Recognizing the need to leverage the private sector in developing a solution, the plan includes engagement of the private sector using “Public Private Interface Agencies” (PPIA) to enlist, sensitize, incentivize, and monitor diagnosis and treatment by private providers, to provide patient cost offsets such as subsidised diagnostics and free drugs to privately treated patients, and improve case notifications to the RNTCP. Ongoing PPIA pilot projects in Mumbai and Patna should inform policies for refinements and scale-up of this model.

Outside of India, Operation ASHA is now replicating its model in Cambodia. In Bangladesh, BRAC‘s tuberculosis program with shasthya shebikas has been successful in the public sector. This model is now creating linkages with private providers. In addition, they have created partnerships with garment industry owners in export processing zones that provide factory workers with better access to tuberculosis diagnosis and treatment utilizing BRAC’s infrastructure.

With donor support, Interactive Research and Development (IRD) and partners are expanding access to Xpert MTB/RIF (Cepheid Inc, CA), a WHO-endorsed test, in the private sector in Dhaka, Jakarta and Karachi, through mass verbal screening in private clinic waiting rooms, and referrals for computer-aided digital X-ray diagnosis. This model includes management of comorbid conditions such as diabetes and chronic obstructive pulmonary disease, to generate revenue for this social enterprise.

All these models are promising, but the goal of a complete, patient-centric solution is still elusive. Continued innovation in the development of scalable, sustainable and replicable business models to provide such solutions is critical.

To improve accessibility and affordability, many of the models will depend on community workers and coordinators, underscoring the need for well-designed strategies for their recruitment, training, incentivization, and performance management. Information and communications technologies will also be critical for success.

Solution-centric approaches have shown promise in several other BoP contexts, from affordable eye care to artificial limbs. By using product and process innovations, often with community champions, these models have shown that it is possible to serve the BoP market needs effectively and efficiently and with compassion and dignity. Individuals with tuberculosis deserve nothing less.

Note: This blog post is an edited version of a Comment that was published in the Lancet Global Health on 24th March 2014. The Lancet Global Health is an open access journal, and all material is published under Creative Commons licensing, with copyright retained by the authors.

The views are of the authors.

Written by JournalistsAgainstTB

March 24, 2014 at 7:56 am

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