CAN WE AFFORD THIS?

Affordable Healthcare for All!
Chitra Thaneerkulam
Innovations take us closer to affordable healthcare for all. New cost effective drugs with better efficacy will advance affordability. There is also an invisible facet to affordability. Sure, we have new drugs and diagnostics but we are also compounded with issues like antimicrobial resistance, inaccurate diagnostic procedures, inefficient or wrong treatment protocols and more importantly lack of effective monitoring of disease data!! Affordability becomes a reality only when the veil of these negative factors is torn.
A publication on Dec 11, 2014, of Antimicrobial Resistance: Tackling a Crisis for the Health and Wealth of Nations, from the Review of Antimicrobial Resistance, led by economist Jim O’Neill and informed by two reports prepared by consultants KPMG and RAND Europe estimates that 300 million people will die as a result of drug resistance during the next 35 years. In addition to antibiotic resistance, the review projects figures for resistance to antimalarial, HIV, and tuberculosis drugs. Can we afford this?
Isn’t it time we work to better inform the stakeholders in infection control?
However, the consultants KPMG and RAND also admit the data are unreliable, and state that: “These were considered as proxies in the absence of better data or forecasting tools; much more details and robust work will no doubt be done by academic researchers and clinicians in the future”. The authors also state that their: “teams experienced significant problems with data collection because of the lack of consistent sources monitoring the number of bacterial infections globally”. Can we afford this?
Too often science and social research has been perceived to be dichotomous and isn’t it time we also focus more on socials research of disease along with scientific research to be more effective and affordable? This would take us closer to affordable healthcare for all!!

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PLACARDS FOR THE PUBLIC

SPIT AND SPAT NOT FOR US
How often have been witness to spitting in public? How many of us have dared to condemn it? If we dare to do it, we welcome a spiteful much worse a public spat. Isn’t it time we begin our Swachh Bharath Swasth Bharath Mission with a ban on spitting in public places?
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Published in the Wall Street Journal in September 2012, this story is still relevant today:
A Woman’s Drug-Resistant TB Echoes Around the Word
http://online.wsj.com/article_email/SB10000872396390444273704577633431646496346-lMyQjAxMTAyMDAwODAwODg3Wj.html?mod=wsj_valetleft_email

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TB
Know thy symptoms:
• Cough for three weeks or more, sometimes with blood-streaked sputum
• Fever, especially at night
• Weight loss
• Loss of appetite
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DOUBTS ABOUT DOTS

Doubts about Dots
Directly Observed Treatment Short Course (DOTS).
DOTS administered by the Public Health system in the Indian scenario has proved successful with every 8 patient out of 10 treated with DOTS being cured of TB. With a success rate of up to 95% it improves the quality of care. It helps remove poverty, stigma and reduces the burden of the illness. By taking care of patient adherence to treatment and uninterrupted supply of anti -TB drugs, it ensures that TB control efforts are successful.
Despite this, a social assessment study submitted to the Central TB Division, Ministry of Health and Family welfare, Government of India, found that even among poor, marginalized groups, Government health services were sought as a last resort. The most common reason being lack of trust in the system. How do we address this?

PROJECT REPORT November 2014

My observations:

My proposal “Reaching Out”, focusing on communication startegies for OSDD, is taking me on a vibrant journey towards the multitude of issues around communication. I focused on TB and I spoke to technical experts in the subjects and produced blogs on issues around TB. While doing so, I figured out that more than the drugs for TB, the diagnosis and treatment part of TB has a lot for scope for positive change. While public’s limited knowledge of TB was Not a surprise, the most touching part was that the medical fraternity was much in disagreement with how to handle TB. While the government’s DOTS strategy and the healthcare under public sector is doing good, the private healthcare sector needs an overhaul. It is rather concerning as private sector is the most often first point of contact for healthcare by the public and the way the private sector handles TB despite the government’s mandatory rule of notifying TB cases leaves a lot to be desired. Over and underdiagnose and not adhering to DOTS regime were observed. Many healthcare practitioners agreed that they were not suitably trained to handle TB.

A paper published in PLOS titled” Tuberculosis Management Practices by Private Practitioners in Andhra Pradesh, India”, by Shantha Achantha et al in August 2013, evaluated self-reported TB diagnostic and treatment practices amongst private medical practitioners against benchmark practices articulated in the International Standards of Tuberculosis Care (ISTC), and factors associated with compliance with ISTC. It concludes thus, ”Few private practitioners in Visakhapatnam, India reported TB diagnostic and treatment practices that met ISTC. Better engagement of the private sector is urgently required to improve TB management practices and to prevent diagnostic delay and drug resistance.”

This further necessiates the need to reach out to the private sector, I strongly feel that OSDD can play positive role through its commuication strategies in reaching out to this segment and sensiitizing them. Also I further feel that a study of other communication issues underlying TB need to be explored too.

So far I have contributed the following:

As part of mentoring students, gave a presentation on on 14th May 2014 on “Communicatin in Science to a group of chemistry students from Kerala. It was a virtual presentation and the talk touched about the importance and impact of good communication. I sensitized the students about effective use of web media for communication gathering and dissemination.

The following blogs were written.

Impact of Media Wing Focused coverage of TB

http://osddbengaluru.net/osdd/?p=14986

Breaking Barriers

http://osddbengaluru.net/osdd/?p=15073

Research To Reality

http://osddbengaluru.net/osdd/?p=15504

Why Should we talk about TB?

http://osddbengaluru.net/osdd/?p=17760

Proposed future plan of action

MAKING TB PREVENTION, CARE AND CONTROL AFFORDABLE TO ALL

Objective:

To educate the public about TB prevention, care and control.

To achieve the above, a multipronged approach of distributing pamphlets to general public, giving multimedia presentations at educational institutions and workplaces is proposed.

Outcome

Initiate interest and contemplation about TB control measures and programs.

How-

The distribution of pamphlets will be done through pharmacy chains, clinics where the audience comes with a health seeking attitude. This attitude can be utilized positively to direct their attention towards another pressing health issue.

Religious groups like temples, church groups, mosques can also be considered. The leverage of these groups is very powerful. Potential barrier to this idea could be that religious groups may not be sensitive to their impact of participation in such activity. With right persuasion and motivation this barrier can be broken. Another question could be why an audience would welcome a health message in a religious setting? The answer lies the question. According to the tested Louis Sutton Model of Switching Cognitive Gears, when a message is presented in novel, unfamiliar and unexpected setting, it initiates cognition.

Similarly, the multimedia presentations at educational institutions can impact young minds and they in turn can influence their families. With current concept of Life skills education and audio visual sessions, schools will be willing to accommodate a presentation on TB control and care. The audience will also be receptive to health messages as they are involved in active information processing at school.

Work places can also be selected to sensitize issues around TB. With employee benefit and ultimately corporate benefit in mind, business would welcome such presentations.

Challenges:

The audience is varied but the goal is singular. The challenge lies in integrating the goal with the differing levels of audience. Since we know the profile of the two groups of audience, the schools and workplaces, designing message to this group would be fairly easy. But with the pamphlets to the general public which would contain a huge array of people, messages have to be context specific with one kind for pamphlets in health setting and another appealing to the cultural setting i.e. religious groups. Nevertheless the message has to be clear, concentrate on one main theme and be concise. This would tackle the challenge.

The pamphlets can be A4 size folded in a booklet form. Around 5000 copies can be distributed initially. The multimedia presentation can be for 20 minutes with an interactive session for another 20 minutes. We can plan to cover 10 corporates and 25 schools.

Pretesting of the material would be done to check if it is appropriate and acceptable to the intended audience. Since health behaviors are dependent on social culture of beliefs, values, and traditions, it is important to use materials and strategies that are consistent with these values. Pretesting would ensure this.

Timeframe

4 Months-12 weeks

Measuring the program effectiveness

At academic institutions and workplaces, feedback forms will be distributed along with a questionnaire to test if and how the message has been received.

With general public, interviews with the pharmacists, hospital administrators and religious group administrators would be conducted to check how well the information was received.

Also a volunteering form would be distributed to all the audience to see if and how the message has motivated. After all, open source is about collective collaboration and if the program motivates volunteers to spread the message about TB, it can be deemed a success.

Follow –UP

Upon successful completion, since the audience has been prepared to contemplation about TB, a program can be designed to motivate positive behavioral change towards TB control. We can plan to rope in ambassadors towards TB control, use the current Swach Bharath campaign to press the importance of hygiene in TB control and initiate behavioral change.

Integrating with OSDD’s objective

The first step towards successful implementation of OSDD’s motto of affordable healthcare for all is in creating awareness about issues around health and healthcare that is available. While science makes strides on one hand, challenges to confront like MDR TB, XDRTB have evolved mainly due to lack of sensitivity and awareness. While there are efforts towards creating TB awareness by both governmental and other non-governmental agencies, more effort, manpower and sustained intense campaign is needed.

OSDD’s efforts could be a starting point towards crowd sourcing of volunteers towards TB control. The idea is to generate ideas and volunteers who could spread the message.

Tamil Translation of article by Dr.Manickam Balasegaram

ஓபன்  ஸோர்ஸ்  ஃபார்மாவின் அவசியம்

உயிரித்தொழில்நுட்ப ஆராய்ச்சித்துறையில்(Bio medical research) சில சீரழிவுகள் நிகழ்ந்துள்ளன எனும் கருத்தினை சில காலங்களாக பலர் தெரிவித்து வருகின்றனர். இத்துறை திறம்பட செயல்படவில்லை என்பது மறுக்க இயலாது. இங்கு காப்புக்கொள்கை(protectionism) மற்றும் முதலாளித்துவம் மேலோங்கி நிற்பதோடு இரட்டிப்பு வேலை, பெருஞ்செலவு மற்றும் தொடர் தோல்விகள் ஏற்படுகின்றன.இதன் விளைவு பயங்கரமாகிறது.. இதன் காரணமாக அத்யாவஸ்யமான மருந்துகள் கண்டுப்பிடிக்கடத் தவறுகின்றனர். மக்களை கருத்தில் கொள்வதில்லை. உதாரணமாக, இவ்வருடம் வெளி வந்த ஹெபடைடிஸ் சீ க்கான மருந்தின் விலை $1000(ஒரு மாத்திரைக்கான விலை)!

இத்துறையை பற்றிய மிகப் பெரிய விமர்சனமனாது, இது அறிவியலை வளர்ப்பதில்லை என்பதாகும். அறிவியலின் நோக்கிற்கு புறம்பாக அமைந்துள்ளது என்பதும் ஆகும். அதாவது,திறனாய்வு சார்ந்த ,வெளிப்படையான, சுதந்திரமான கருத்துப்பரிமாற்றத்தை வளர்ப்பதில்லை. அறிவியலானது, இயற்கையில் ஒரு கூட்டு முயற்சி. பெரிய மேதைகளும்  பலரால் வெளியிடப்பட்ட தகவல்களைக் ஆதாரமாகக் கொண்டே தங்கள் ஆராய்ச்சிகளில் வெற்றி காண்கின்றனர்.இவ்வாறிருக்க, இத்தகைய தகவல்களுக்கு வேலியிட்டு சுயநலத்திற்கு பயன்படுத்த எண்ணுவது பலனற்ற இறுமாப்பாகும்.

ஒரு சமூகமாக நாம்  ஆராய்ச்சி மற்றும் வணிகத்திற்கான பிற வழிமுறைகள மேற்கொள்ளத் தயாரா?தொழில்நுட்ப ஆர்வம்,வளர்ச்சி மற்றும் வணிகம் சார்ந்த வெற்றி அளிக்கும் ஒரு வழியை உருவாக்க இயலுமா?இது ஏற்படுவதற்கு, முதலில் நாம் ஆராய்ச்சிக்கு ஒரேயொரு வழிமுறை தான் உள்ளது என்னும் எண்ணத்தை கைவிடவேண்டும். வேற்று வழிகளை நாடவேண்டும். ஓபன் ஸோர்ஸ் என்னும் வெளிப்படையான பன்முனைஆராய்ச்சியே இதற்குத் தீர்வு.

இது ஏற்பட நாம் வெளிப்படையான,ஒருங்கிணைந்த மக்கள் கூட்டமைப்பு           மற்றும் தகவல் பரிமாற்றத்தை எற்படுத்த வேண்டும். இதனால் ஆராய்ச்சியில் ஒரு கட்டத்திலிருந்து மற்றொரு கட்டத்திற்கு  விரைவில் பயணிக்க இயலும். மேலும் நம் ஆராய்ச்சி சார்ந்த முடிவுகளை நிறுத்தவோ தற்காலிகமாக இருத்தவோ இயலும். நம் தகவலை பலரின் நுண்ணாய்விற்கு உட்படுத்துவது நம் தகவலை தரப்படுத்துவதற்கான சீரிய வழி. இவ்வாறு செய்வதனால்  பல புது எண்ணங்கள்உருவாகி இத்துறை வளர வழி வகுக்கும்.

தகவல் பரிமாற்றம் என்பது கடினமான மற்றும் அச்சுறுத்தும் ஒரு விஷயமாக தெரியலாம். ஒரு வித தீவிரவாத எண்ணமாகக்ககூட புலப்படலாம். பிற துறைகளில் இக்கருத்துப்பரிமாற்றம் வெற்றிகரமாக கடைபிடிக்கப்படுவதால் நாமும் நம் எண்ணத்தை மாற்றியமைக்க வேண்டும்.

பெரிய நி றுவனங்கள் மற்றும் அறிவுசார்ந்த(Intellectual Property) காப்புறிமைக்கொன்ட இத்துறையில் தகவல் பரிமாற்றம் கடினமாகக் கருதப்படலாம். இதன் வெற்றி இரண்டு அடிப்படை விஷயங்களான,நம் இறுப்புக்களை கையாளும் முறை மற்றும் சாதனைகளை பகிர்ந்தளிக்கும்  முறையைப் பொருத்திருக்கும். இதனை வெற்றிகறமாக நடைமுறைபடுத்த அறிவுசார்ந்த காப்புரிமையை நாம் மறு ஆய்வு செய்யவேண்டும். சமுதாயம் ஓபன் ஸோர்ஸ் என்னும் நவீன ஆராய்ச்சியை ஊக்குவிக்க

வேண்டும். நவீனமயமாக்கல்,அறிவியல் ஆராய்ச்சி,மக்கள் நலம் ஆகியவற்றை வணிக நோக்குடன் செயல்படுத்த இயலுமா? இயலும் என்பது என் கருத்து.இக்கொள்கையை கடைப்பிடிக்கும் நிறுவனங்களே வருங்காலத்தில் வெற்றி கொடிக்கட்டும் என்றும் நம்புகிறேன்.

Dr. Manica Balasegaram has worked as a physician, public health specialist, clinical researcher, drug developer, and advocate for access to medical technologies. He currently works as the Executive Director for the Access Campaign of Médecins Sans Frontières. Follow @mbalasegaram on Twitter

This article originally appeared on @Medium as part of the “Why We Need Open Source Pharma” series

PROJECT PROPOSAL

REACHING OUT

COMMUNICATION STRATEGIES FOR OSDD IN REACHING OUT TO THE PUBLIC

A project  proposal by Chitra Thaneerkulam

I propose to pursue the following in helping OSDD communicate and connect with the general community.

BACKGROUND

The preface of “The Public Understanding of Science” published by The Royal Society, London 1985.goes thus on science communication “It deals with an issue that is important not only, or even mainly, for the scientific community but also for the nation as a whole and for each individual within it. More than ever, people need some understanding of science, whether they are involved in decision-making at a national or local level, in managing industrial companies, in skilled or semi-skilled employment, in voting as private citizens or in making a wide range of personal decisions. In publishing this report the Council hopes that it will highlight this need for an overall awareness of the nature of science and, more particularly, of the way that science and technology pervade modern life, and that it will generate both debate and decisions on how best they can be fostered.“ Emily Coren in Soapboxscience a guest blog by nature.com 1

Public’s understanding o science is crucial for any research to succeed as they are the key stakeholders as consumers. The need for public understanding of OSDD’S activities is even more pronounced as this is a government funded agency. Public’s understanding of OSDD’s activities could help the organization achieve its goals better. For this to happen, various modes of communication need to explored. In this background I looked  at the world wide web as an effective medium as the world has become web savvy.  Anything gone online has the capacity to captivate its audience and in this context using the web for communication would mean success towards strengthening OSDD’s communication strategies.

In this light, I along with other members of the OSDD community, browsed through the content available on the web to see how OSDD effectively communicates with its members and the general public. There were few initiatives, but they have not been continued systematically and structurally over the long run. Hence, we thought that in order to propagate the ideas of OSDD to the public, scientific community as well as the OSDD community itself, we could enhance the ‘virtual effectiveness’ by having a team dedicated to this activity.

The dedicated team would take care of facilitating blogging, e-learning; face book posts, tweets, e-paper publishing and web content management.

Objectives

The objective of this project is to help OSDD succeed in its mission through effective and efficient communication with its stakeholders. This will be achieved by utilizing the potential of the internet.

Plan of Action

It is proposed to achieve the above, by adopting the following strategies:

  1. Interviewing of subject experts: –
  1. Coordinating of discussion between domain experts to help the community to understand the challenges that the drug discovery process faces.
  1. Outreach Programs: –
  1. Coordinating/Conducting ‘hands-on learning’ programs at various colleges and institutions across the nation.
  1. Management of Web based activities with the help of a database expert as well as an expert capable of utilizing the virtual space for communication.
  1. Maintenance and continuation of e-learning materials available to our OSDD participants where they can interact with experts in the drug discovery processes.
  2. Translation of popular science publications into various languages that will be uploaded on the blog.
  3. Introducing students/project fellows/ summer fellows/ researchers to various scientific blogs and scientific social media forums.
  4. Blogging activities touching upon social and community needs as well as the propagation of the Scientific Activities of OSDD.
  1. Mentoring of summer fellows: –
  1. Creation of blogs and YouTube videos (editing).

The duration of the project would be six months.

Work Plan

As a part of achieving th eabiove plan of action, I propose to join the team in contributing to the following

Blogging on OSDD’s activites aimed at enlightening the public (2 blogs per month)

Supporting web content management

Supporting summer students in blogging activites pertaining to OSDD

 

Output

The following skill sets will be obtained: –

Blogging

Web Content Management

Journalism

References:

1.Emily Coren http://blogs.nature.com/soapboxscience/2013/02/27/why-we-need-science-communication