Handbook for Using the PCTC

We apologize for our absence these last six weeks. On seeing the new WHO Global TB Report 2010 ("No Data Available on Patients Charter") and not having a response from Marcos Espinal and the Stop TB Coordinating Board (request for revitalized endorsement), it became clear that new BOLD steps must be taken to give the PCTC, and the Handbook, a major 'maxi' boost.

So a handful of volunteers have been very busy organising two bold and innovative 'boosters'.
The first is a quick jump-start for the PCTC and Component 5 of the Stop TB Strategy in the short term.
http://bit.ly/9b9amd

The second booster is long term, although its start-up has already ignited motors to move the PCTC forward.
www.imaxi.org

Over the next few weeks, the boosters will begin to revitalize our efforts to develop this 'open handbook'. We look forward to restarting with you, and getting back to moving forward, together.

Being ex-patient, I am interested in the TB Patients' Charter which had been distributed in Indonesia in Bahasa in limited numbers. I was lucky to have one as it gave me strength during my treatment, so I sent some comments to the new 2010 version. Now I think this Handbook for Using the Patients' Charter is a excellent initiative, and because the drafting process is open for everyone, it can reflect the ideas of many experiences, and become a useful little book for helping others to also have strength.

TB is not a solitary curse, it is not a shamefull medical problem to keep secret. Its not personal. Its a community disease. TB hits the poorer and more vulnerable and spreads because of economic and social conditions. When people in a community come together to improve their conditions, then change happens. To stop TB here, a community social movement is required. For me the Patients Charter makes the link between disease, rights, and community very obvious and motivated me to get involved. 'Getting involved' is one of the responsibilities of the Charter. So I think this Handbook is needed to get many others involved with building a social movement, based on the recognition of everyone having rights and having responsibilities.

My first suggestion is that the Handbook is also developed in different languages. Most TB patients do not read or write english. A version Bahasa Indonesia would be useful here, and I guess other countries also need their language versions to participate better. The more patients who understand about using a Charter of rights and obligations the more will get involved and help others. --- Jasan Bramana

An interesting post from Claudio Schuftan as part of the Human Rights Reader series made me think of the Patients' Charter and the Handbook. Among many other points, he writes "The message of applying the human rights-based approach as an avenue to empower claim holders, to work with duty bearers to help them comply with their human rights obligations is hardly ever heard." Although I agree with the overall statement, it may be useful for those interested in TB Care to focus some thought on the use of "claim holders" and "duty bearers", and see both the promotion of the Patients' Charter and the International Standards in these terms. http://www.worldcarecouncil.org/content/public-health-conferences-what-w...

The Patients' Charter can be a powerful tool for building the real, everyday, face to face, human to human,on the ground partnerships between people needing care and their doctors, nurses, and health providers. It can be used to frame the roles of everybody dealing with tuberculosis, and when taken with the International Standards for Tuberculosis Care (ISTC), they lay out the basics for everyone involved - patients to provider.

However, although launched by the WHO in 2006, it has been buried in cupboards in Geneva and the WHO regional and country offices ever since. At a time when resources will be getting tighter and drug resistance growing, innovative tools must now be used. The major promotion of the Patients' Charter is required now so they must take it out of the cupboards and all of us find new ways to get the PCTC+ISTC into the hands of millions.

But I agree with the other comments about the urgent necessity of understanding why the Patients' Charter has not been promoted by WHO and most of the national programmes. Learning why it has not been promoted will initiate a process that better engages these authorities to promote and endorse the PCTC. Studying a collective failure can lead to collective progress. //... Anya

There is a substantial gap in our understanding about why the Patients Charter has not been taken forward by the countries with heavy burdens of tuberculosis. Although the comments here mostly point to attitude and 'mindsets' of the health programs and medical profession, this has not been evidenced by any study of the matter. It may be that the TB Control system of DOT specifically adds to this reluctance or refusal to adopt the Charter in practice. It may be that the fear of litigation in case rights cannot be fulfilled is a leading reason. It also might be lack of awareness of the document. I would recommend that some study or survey is conducted to ascertain why the national programs have not grasped this tool, even though it is part of the GF toolkit for all TB grants. Knowing why not may be the first step to knowing how to. A.K.Kurtz, MPH

This Handbook can have a very positive impact on addressing the TB pandemic as a platform for exchange that will facilitate collaboration between health providers and health consumers. Both have inter-related rights and responsibilities. Until now, these two groups have not had an interacting framework to use together, so we should encourage all providers and patients to visit this site, and to share their views. Getting TB professionals and civil society organizations to contribute to this Handbook is essential. This would happen readily if the Patients' Charter Poster is put up on walls in every waiting room and bulletin board of DOT Centers. WHO should play a role in encouraging national program managers on this, as the WHO included the PCTC in the Stop TB Strategy 2006-2015. But unfortunately the WHO seems to have taken no initiative or effort on its promotion since 2006, so they must be reminded that this is a responsibility that they must fulfill. But it is also the responsibility of us 'stakeholders', those who have helped develop the PCTC over the years, and our civil society organization friends, to reach out to inform as many people as possible. First step could be to send out an invitation to participate through all the list serves and networks in global health. Key message - "PCTC Poster: Print it out- Put it up".

It's really a pleasure to see the PCTC Handbook begin its wiki process of seeking inputs to develop a collective output. I remember the earlier Patients' Charter drafting, and have been waiting for all its contributors to regroup and march forward. I am sure that others besides myself are very frustrated by the lack of support from the Govt, and the lackluster promotion of the WHO in spite of it being core element of the Stop TB Strategy. This open PCTC Handbook also comes at a time where it is needed more than ever. What little progress that has been made in advancing the Rights of the Patients Charter are under threat from the prioritization that new funding-cutbacks and flat budgeting entails. TB patient's rights and responsibilities are probably last on the list of priorities of most donors, and clearly not any of the government programs. But it is the community, led by those most affected, that can organize a rapid response and find the solution in the short term. Perhaps this Handbook can open up some minds and find new methods of locally funding local community care improvements, which, like the Patients Charter, is towards the bottom of the priorities for funding. Maybe some experts from the top will use this online, and 'safe' media to exchange and share with patients, in a way they feel they can't do, or won't do, while in their medical establishment. Maybe it will reach some Patients, hungry for change. So, my thanks to the team who set this all up, and now, it is for all of us to use. This means contributing ideas and experiences.
I will read through slowly, and add mine, with pleasure. / KAZ

This Handbook is being produced online through an open-drafting process. Anyone over the age of six is welcome to post appropriate comments, blogs or short articles (please include the link/source of any published material posted) that are 'on-topic'. Moderators will oversee the review of the posts, suggest links to related information, and produce a short summary of each page, also open for comment.