i-Base phoneline and information request services: review of service use: 2004-2011

1 October 2011. Related: Other news.

Charlotte Walker, HIV i-Base

The following review provides an example of a unique and successful community-led treatment advocacy service.

Background

In the UK there is a high standard of health services available for HIV. The latest treatments, expert care and specialist support services are easily accessible. To compliment these services, i-Base produces publications targeting doctors, healthcare workers and HIV positive communities.

The i-Base Treatment Information Service, both phone- and web-based, is celebrating its 10th anniversary this year. The service offers high quality up to date information on HIV treatment and treatment-related issues. I-Base is the only organisations to provide an online HIV treatment-related question and answer service in the UK. This project is an example of a successful community-led advocacy project which aims to ensure positive people have access to the essential information they require to make informed decisions about their health.

All calls and enquires have anonymised data logged onto a database as part of the quality control for this service. This allows the project to review the important of different subjects and to track service use and response rates.

Use of service

From 2004 to June 2011, 1949 treatment calls have been taken and 3271 online questions answered. The demand for this service is growing exponentially. During 2010, 1036 web-based and 296 phoneline questions were answered. Table 1 below shows the numbers of questions answered broken down into 2-year periods including a projected estimate for 2011 based on 2010 figures.

Table 1: Calls and information requests 2004-2011

The phoneline is free to call from within the UK but is not an international number and so is UK-focused only. The web-based Q and A service is available for people worldwide. 2010 has seen the most diverse use of this essential online service with only 31% of questions coming from people within the UK.

UK-based enquiries predominantly ask about treatment-related issues. The most common area where the positive community require more information is in related to side effects (23%) followed by starting and changing treatment (13% and 12% respectively).

Web-based questions cover both treatment, testing and transmission risk. This has led to the development of new online resources on testing and transmission to ensure the focus remains strongly on HIV treatment.

Monitoring the impact of the publications, phoneline and web-based services offered by i-Base is important if the services are to continue to meet the needs of the service users. Users are encouraged to provide feedback using a simple anonymous online survey.

Between July and December 2010, 108 feedback forms were received.

The results of this feedback are given as the percentage of service users providing this feedback for each point.

• 12% had called the phoneline
• 88% had asked a question either online or by e-mail
• 29% had read one or maore i-Base treatment guides
• 13% had read i-Base research reports (HTB etc)
• 48% were from outside the UK
• 6% were healthcare workers or treatment advocates
• 81% agreed with the statement: I now understand more about HIV treatment
• 82% agreed with the statement:  I now feel more confident about dealing with HIV

Evaluation and monitoring

Comments about the quality of i-Base information services given as part of the feedback form demonstrate its impact on the service users treatment decisions and the healthcare they receive. Examples of these comments and the impact of i-Base’s information services are as follows:

This is the second time I have used i-Base to ask a question relating to my treatment. Your website and available literature is very clear and your response to my specific question asked today was very prompt and helpful in helping me make a decision relating to participating in a study. Thank you very much.

As a care giver I want to be able to tell if my patient is receiving the right treatment…

My doctor has removed the excess drugs I was taking since I received the information you sent me. I feel lighter now that I have reduced the drugs from 5 to 3 ARVs. Once again thanks for your responses.  I will read the booklet you have referred to me.

Your suggestions and questions made it easy for me to have an intelligent conversation with the consultant. It also helped me to ask the right questions which in the end contribute do me making an informed decision that I left the clinic happy with.

Fantastic as always, i-Base! I wrote in with a question and it was answered the next morning. i-Base is a fantastic resource and the information provided is detailed yet always easy written in a way that is easy to understand. I don’t have much time with my doctor at the clinic and the team at i-Base have answered the questions that come up between visits and put my mind at rest. While it can be hard reading about some of the issues we face with HIV I feel it’s always better to understand and know what we may have to face in order to deal with it. Many thanks.?

Conclusion

HIV i-Base has been running for just over 10 years now and the range and type of services offered are unique in the UK.

I-Base is an example of a successful community-led intervention that is both empowering and informative.

In the current financial climate where resources are becoming more limited and the NHS more stretched in the time and quality of services they are able to offer each patient, there is an important role for community-led organisations such as i-Base to offer user-friendly treatment information and support to the positive community.