How a consumer health library can help empower patients with information

Summary
How can one go about empowering patients with information in developing countries which have limited resources ? A free public health library can provide information directly to patients, and encourage them to make their own decisions, in partnership with their doctor. It can also serve as a resource center for doctors, who can use it to develop their own patient educational materials. This paper describes our experience in setting up India’s first consumer health library, the Health Education Library for People ( HELP) in Bombay, India.

Lancet Eprint 1999; 99ART/9249: UR


Traditionally , it has always been the doctor who had all the information about the medical problem – the patient simply followed the doctor’s orders ! However, today we know that if we can empower the patient with information about his own medical problems, he can then become an educated partner in his own medical care ( 1-3 ), instead of leaving everything upto his doctor. This is why there are many governmental initiatives in the West ( 4-6) which have been designed to encourage doctors to share information with their patients. However, few attempts have been made in India as yet to achieve a similar goal.

While information about illnesses was not easy for the patient to obtain in the past, this has changed dramatically in the developed world in the last few years. After being exposed to the concept of educating patients and sharing information with them in USA and UK ( 7), we decided to make this type of information freely available to patients in India as well. We therefore started HELP– the Health Education Library for People, in Bombay – India’s medical center , in May 1996. This is India’s first consumer health library, which has now grown to become one of the world’s largest consumer health libraries. HELP was modelled on the Planetree Health Library in California (8), and we imported the Planetree Classification scheme so that our books are catalogued in a reader -friendly fashion. Input from medical librarians and reference books ( 9-11) was used to guide us in our activities.

HELP is a free public library, which aims to empower people by providing them with the information they need to promote their health , and prevent and treat medical problems in the family in partnership with their doctor. HELP is run by a registered charitable trust, the Community Health Research Program, which finances all its activities. HELP offers the following facilities: airconditioned reading rooms, with a seating capacity for 20-25 persons; an upto date collection of over 5000 consumer health books, 10000 pamphlets, and many magazines and newsletters; audiovisual educational media, including over 500 video tapes which can be viewed in privacy in the library; computer software , including over 30 CD-ROMs on all health and medical topics; and photocopying facilities, at Re 1 per page. HELP has 4 staff members ( including librarians) to help readers find the information they need.

The quality of health information provided to patients has been a topic of major concern to health professionals, since there is a very real danger of misinforming unsophisticated readers with biased and unreliable information ( 12). We try to include information from a wide range of sources – including commercial published books, non-profit organisations, patient support groups, clinics, hospitals and pharmaceutical companies. We try not to censor materials, and expect our readers to use their discretion and judgment in assessing the value of the information they retrieve - we do not endorse any of it !

We believe that a consumer health library can have a catalytic role in empowering patients with information. Doctors who visit HELP adapt the patient educational materials we have for their own practise , and customise these for educating their patients, to improve the clinical care they provide ( 13,14). A major deficiency in our collection at present is that most of our materials are in English ( 15) ( since they are produced in the West). We hope that doctors all over India will translate these into their own regional languages, so that they can use this for teaching their own patients. We plan to collect all these translations, so that we will gradually be able to build up a sizable collection of materials in regional Indian languages. This will allow much wider dissemination of patient educational materials in India.

The resources at HELP also have a a multiplier effect , because they are used frequently by journalists , thus helping to improve the quality and accuracy of reporting for medical topics in the lay press in India . The media is a powerful force in shaping public opinion and by improving the quality of medical reporting, we hope to reach out to many more people . Reporters who use our resources for writing health stories for regional language magazines also send us a copy of the local language story, allowing us to increase our Indian language holdings.

Ultimately, we hope that well informed patients will demand the best treatment available internationally ( 16) - and that this will act as an incentive for doctors to update their skills, and for hospitals to improve their facilities. A criticism of HELP has been that it is likely to be used only by educated , rich patients. However, we expect that HELP will have a "trickle-down" effect – so that patients from all sections of society will start learning to ask their doctors intelligent questions.

We use the internet extensively to research users' queries and to answer their questions (17). However, during our research, we found that there was very little reliable information available on Indian health and medicine on the Net. Thus, we could retrieve information on the leading cardiologists in Mayo Clinic, but we couldn't help a user to find the names and addresses of cardiologists in Kanpur! We therefore decided to correct this situation by putting up our own website at http://www.healthlibrary.com . HELP has become a prototype of the modern digital library and this allows us to extend. our outreach services, by providing consumer health information to internet users from all over the world !

We encourage doctors to refer their patients to HELP, if they are unsure where to find the relevant information We then request the patient to discuss the results of this information search with the patient, so that the doctor can guide the patient as to which information is relevant to his particular problem. This can help the doctor and patient to become partners in making medical decisions !

While HELP does not have an advertising budget, we do provide health-related information to many magazines and newspapers, who offer us with free advertising space in exchange, thus allowing us to create awareness about the services we provide.

We have also realised that there is a need to " market " the idea of patient education more widely in India, and are exploring the possibility of sponsorships, as well as soliciting public service advertising. We will also be undertaking a research study to assess whether the information we provide makes a difference to the actual medical care our users receive, since data on patient education and its impact on the quality of health care received is practically nonexistent in India. Most of the feedback we have received has been very positive, but it has only been anecdotal so far, and we need to document the utility and cost-effectiveness of our services, as has been done in other countries ( 18).

We are also trying to encourage hospitals all over the country to start similar patient education libraries in their premises. Hospitals, after all, have a "captive population" of patients’ relatives who have thousands of unanswered queries . These in-hospital patient education libraries ( 19-21) can help hospitals to improve the medical care they provide – and they could be as simple as a single room with a computer hooked upto the internet; or grow to become as large as ours. As with any new idea, we expect it will take time for this to gain acceptance, but we do hope it will soon become routine for every hospital to have a Patient Education Resource Center !

To conclude, the disempowerment of the patient in India today is truly tragic. Traditional Indian medical systems such as Ayurveda, which evolved over many centuries,

placed a lot of emphasis on the patient taking responsibility for his or her own health. However, modern medicine as practised in India today, copies the traditional Western approach of delivering medical care to a passive patient, who is meant to simply follow the doctor's orders. What is truly ironic is that while the West is relearning the principles of patient empowerment, and holistic medicine is becoming popular in the developed world ( 22) , Indian doctors continue to treat their patients as second class citizens. Hopefully, Indian doctors, too, will once again learn how to put the patient at the centre of the medical universe – and we hope HELP will help them to do so !

References:

References

1. Gann, B., ‘Why share information with consumers?’, in: ‘But will it work doctor?’ Dunning, M. and Needham, G. (Eds.). Winchester: Consumer Information Consortium; 1997. ISBN 1898300038.

2. Deber RB. The patient-physician partnership: changing roles and the desire for information Candian Medical Association Journal 1994, 151: 171-6.

3. Strull WM, Lo B, Charles G. Do patients want to participate in medical decision-making ? J A M A 1984; 252: 2990-4.

4. Deering MJ, Harris J. Consumer health information demand and delivery: implications for libraries . Bull Med Libr Assoc 1996; 84: 209-16.

5. Department of Health . The patient’s Charter. London: HMSO, 1992.

6. North East Thames Regional Health Authority . Making it happen: a guide to two-way patient information. London: North East Thames Regional Health Authority, 1994.

7.Martin ER, Lanier D. Networking consumer health information: bringing the patient into the medical information loop. Bull Med Libr Assoc 1996; 84:240-6.

8. Schmalz, R, Cosgrove T, Ford C, Kimber C. Planetree Health Resource Center Classification Scheme, Planetree Health Resource Center , 2040 Webster Street, San Francisco, CA 94115

9. Cosgrove, T. Planetree health information services: public access to the health information people want. Bull Med Libr Assoc 1994;82:57-63.

10. Rees, A M., ed. Managing Consumer Health Information Services. Phoenix, AZ : Oryx Press, 1991.

11. Murray, S. Developing A Consumer Health Information Service: A Practical Guide. Metropolitan Toronto Reference Library, 1995.

12. Coulter A, Entwistle V, Gilbert D. Informing Patients – An assessment of the quality of patient information materials. London: King’s Fund, 1998.

13. Watkins CJ, Papacosta AO, Chinn S, Martin J. A randomized controlled trial of an information booklet for hypertensive patients in general practice. Journal of the Royal College of General Practitioners. 1987: 37: 548-50.

14. Wise PH, Pietroni RG, Bhatt VB, Bond CS, Hirst S, Hooker RJ. Development and evaluation of a novel patient information system. J R Soc Med 1996; 89:557-60.

15. Wilson E, Wardle EV, Chandel P, Walford S. Diabetes education: an Asian perspective. Diabet Med 1993;10:177-80.

16. Marcus SH, Tuchfeld BS. Sharing information, sharing responsibility: helping health care consumers make informed decisions. Proc Annu Symp Comput Appl Med Care 1993:3-7

17. Rippen H E . Criteria for assessing the quality of health information on the Internet. 1997. Mitretek Systems, http://www.mitretek.org

18. Pifalo V, Hollander S, Henderson CL, DeSalvo P, Gill GP. The impact of consumer health information provided by libraries: the Delaware experience. Bull Med Libr Assoc 1997;85:16-22

19. Eisenstein, E F. and Faust, J B. The consumer health information library in the hospital setting. Med Ref Serv Q 1986 ; 5:63-74.

20.Kernaghan, S G. and Giloth, B E. Consumer Health Information: Managing Hospital-Based Centers. Chicago, IL. : American Hospital Association, 1991.

21. Kantz B, Wandel J, Fladger A, Folcarelli P, Burger S, Clifford JC. Developing patient and family education services. Innovations for the changing healthcare environment. J Nurs Adm 1998 ;28:11-8.

22. Astin J A.. Why Patients Use Alternative Medicine: Results of a National Study. J A M A. 1998;279:1548-1553

©Dr Aniruddha Malpani, MD, Medical Director

Malpani Infertility Clinic - Bombay.

HELP, Om Chambers, Kemps Corner, Bombay 400 036, India (A Malpani MD).

Email: malpani@vsnl.com