The use of patients’ stories by self‐help groups: a survey of voluntary organizations in the UK on the register of the College of Health

Abstract

Objective

First‐hand accounts of illness experience are believed to provide important insights for other patients and their carers. We report the results of a survey that explored how patients’ stories are being collected and used by self‐help and voluntary groups.

Methods

The annual College of Health survey contacts 2 458 addresses, which includes many self‐help groups and voluntary associations. A brief questionnaire for the self‐help groups on the register was attached to the summer 1999 survey on behalf of the DIPEx (database of individual patient experience) project.

Results

DIPEx received replies from 309 organizations representing a wide range of interests and conditions. These indicated that 202 (65%) of the groups currently use patients’ stories in various ways. A further 59 (19%) of the groups reported that although they are not currently using them, they would like to in the future. Organizations that use patients’ stories were invited to describe how they use them and provide examples, if applicable. Content analysis of the free text descriptions revealed 22 distinct uses among the 202 organizations using patient stories. The most frequent uses are the inclusion of patient stories in interviews or articles for the group newsletter (74 or 37%) and the use of stories for inclusion in newspaper articles or media broadcasts (31 or 15%). Some form of database of patients’ stories was maintained by 23 groups (12%).

Conclusions

These findings suggest that patients’ stories are widely collected and used to support a wide range of the recognized functions of self‐help and voluntary groups. This is encouraging to the DIPEx project’s efforts to collect and analyse accounts of illness experience, which will be presented with evidence‐based information about the effects of treatments.

Introduction

Illness narratives can be powerful tools for patient information and professional education. A growing body of medical and social science literature describes their collection and application. ¹ , ^–2 Many self‐help groups and voluntary organizations appear to share the view of the illness narrative movement in medical education – that individual patients’ accounts convey important messages which can provide emotional support and information to help with decision‐making. Alcoholics Anonymous report using patient narratives as part of their therapeutic process ^{3 , 4} and narratives are used in other self‐help groups in counselling. ⁵ This paper describes a recent collaboration between a patients’ organization and an academic research group (developing a database of illness experiences) to explore to what extent these personal accounts are currently being collected by self‐help groups and identify the range of uses made of the stories.

The College of Health is a voluntary organization set up in 1983 dedicated to patient‐centred care within health services. In addition to research and training, the college offers a number of information services for patients including a register of self‐help groups and allied voluntary organizations in the UK.

The DIPEx project (Database of Individual Patient Experiences) ⁶ has recently been established in Oxford. The central aim of DIPEx is to improve understanding of the experience of illness and promote a more balanced encounter between patient and health professional. The project is developing a database for a range of conditions which combines a systematic analysis of people’s experience of illness ⁷ with evidence of the effectiveness of treatments, information about support groups and other resource materials. The database will be available as a multimedia resource via the Internet and as a CD‐ROM and is, to our knowledge, unique in the field of patient and health care communication. An important aspect of the project is to provide the same database for patients, carers, health professionals, educators and researchers.

The College of Health conducts a rolling annual survey of the activities of organizations on their register. The DIPEx group was offered an opportunity to enclose some information describing the database project and a brief questionnaire with the College’s annual survey. Our additions to the College’s questionnaire were designed to serve two purposes: to inform groups and individuals on the register of the existence of the database project and to find out whether and in what ways self‐help groups are collecting and using patients’ stories. We enclosed a description of the aims and objectives of DIPEx together with a brief questionnaire. The DIPEx forms were returned with the main questionnaire by post to the College of Health and forwarded to DIPEx, along with the many pamphlets, newsletters and other educational materials that the organizations enclosed.

Method

In May 1999 the College of Health sent a questionnaire to the 2 458 addresses on its register. Information about the aims of the DIPEx database project was included with the mailing. Relevant groups were invited to respond to a brief questionnaire about any ways in which they collect and use patients’ stories. We stated: ‘We are interested in finding out whether, and how, self‐help groups and voluntary organizations use people’s stories about their health problems or experiences of caring for someone else.’ Brief details of the organization and contact person were asked for, followed by a closed question about the group’s current and planned collection and use of stories about people’s health problems or illness experience. The final section was an open question inviting those respondents who reported that they collected stories to describe why they collected them and what they did with them. We did not describe further what sorts of ‘use’ they might make of the stories. We derived the categories of use of patients’ stories by content analysis of the free text responses to the open question. Data were entered into a database programme to tabulate frequencies.

Results

DIPEx received replies from 309 organizations representing a wide range of interests and conditions. Table 1 shows the frequency of the range of reported uses of patients’ stories by self‐help groups: 202 (65%) of the respondents reported that they were currently using patients’ stories in one or more ways. Another 19% reported that although they are not now using them, they either plan to or would like to in the future.

Table 1.

 Frequency of use of patients’ stories by self‐help groups among responders to College of Health survey (n = 309)

Organizations that use patients’ stories were invited to describe how they use them and to give examples. Of the 202 groups using stories, 171 (85%) described their use of stories. Content analysis of the free text descriptions revealed 22 different uses among the organizations using patients’ stories (Table 2). The most frequent uses are the inclusion of patients’ stories in interviews or articles for the group newsletter (37%) and the use of stories for inclusion in newspaper articles or broadcasts (15%). Twenty‐four groups (12%) maintained some form of database of patients’ stories. Some organizations reported several distinct uses of stories.

Table 2.

 Uses of patients’ stories by self‐help groups (n = 202) (Many groups used stories in several ways)

Self help groups have a wide range of reasons for collecting stories. In some cases brief accounts of individual experiences are included in newsletters to illustrate problems and stimulate interest. Details that could identify an organization have been removed from the following quotations.

• “We always put one or two thumbnail stories in our Annual Report. We are planning a booklet of personal stories for publication”;

• “At our conferences the most popular presentation is always the personal perspective of someone who has been affected by (condition)”.

The sharing of personal accounts was also encouraged for their therapeutic value.

• “Several people give individual presentations on their own experience…to our user group. This forms a crucial part of our rehabilitation program and is a vital component of therapeutic progress during the residential week”.

Others use stories of conflict with health or social service professionals to support campaigns to help change professional behaviours or structures.

• “The shared experiences have repeatedly shown problems with health care professionals, communication skills and lack of understanding and compassion in giving devastating news”.

Groups may present “individual success stories” to encourage others.

• “Our newsletter contains a section devoted to patients who have finished treatment. It gives great hope to all those who are newly diagnosed”.

Telephone counselling services may take detailed notes of individual experiences to be able to offer sympathetic and accurate advice when the person phones again.

• “We write down accounts of treatment so far given by parents who phone in. This is to enable us to deal accurately and sympathetically with them when they call again…We don’t record every detail – merely listen and note down chief points.”

Several groups reported that individual stories were effective in attracting media attention to the condition they represent.

• “One of the best ways of getting the media to promote the Trust is writing about real people who are coping with (the condition). Consequently I have built a library of more than 150 people … who are prepared to tell their story to a journalist. This has been a successful strategy in getting media coverage and putting a human face on a disease. It also encourages people with similar symptoms to contact the trust for more information and or consult their local GP. It also gives reassurance to those with the same condition that they are not alone and others feel the same way they do”.

Sometimes stories are unsolicited and groups have no framework for using them.

• “We often get case histories and make no particular use of them – if you would be interested in me collecting them or arranging the people to give them I could publicize this through our magazine or group circular”.

Discussion

The annual College of Health survey gave the DIPEx project an opportunity to contact a wide range of self help groups and voluntary organizations in order to let them know about the database project and explore their current use of patients’ stories. As a percentage of the total addresses that were contacted by the College, the response rate may appear small, but the DIPEx questionnaire was only relevant for certain types of organization on the College register. Some addresses on the register are those of individuals who would not be expected or required to reply to the DIPEx survey. Another reason for nonresponse may be the short lifespan of some small self‐health groups which have ceased to function yet remain on the register. Many of the smaller groups, which are often run entirely by volunteers, might lack the resources to respond to questionnaires. This will be a problem with any survey research with such groups. The smaller groups are probably less likely to be producing videos, websites, booklets and leaflets using patients’ stories, but may be more involved in sharing individual experiences in group meetings, co‐counselling or befriending schemes.

In past years the College of Health annual survey has had a 50–60% response rate (Marianne Rigge, personal communication). We cannot calculate an appropriate denominator because it is not possible to deduce how many of the addresses were for self‐help groups. While the inability to define a precise response rate does limit our ability to generalize from the results, our aim was to describe and illustrate the range of uses made of patients’ stories, not to estimate the frequency with which they are used. Those groups that use patients’ stories might be more likely to respond to our survey, so that the percentage who report using stories may be an overestimate of use among support groups as a whole. However, the responses to our open question about the uses of stories may be more typical; certainly the identified categories cover many of the functions of self‐help groups.

Conclusion

The concept of patient partnership in an era of decreasing paternalism in medicine was explored in a recent special issue of the British Medical Journal. ⁸ The goals of patient self‐help groups were described as providing information and support to their members, providing information to the public, raising awareness, influencing professionals and policymakers, highlighting deficiencies in services and promoting the use of particular treatments or drugs. ⁹ The contribution of patients’ stories to these functions is evident in the responses to the open question in our questionnaire.

Wann distinguishes between the two types of bodies surveyed in this study: self‐help groups in which individuals with a common problem get together to help each other and voluntary organizations with campaigning, networking and service functions. ¹⁰ She has described self‐help groups as a conduit of information and experience, building the health and strength of local communities. The collection and analysis of illness narratives can help in all these functions.

The collection of stories by self‐help groups can serve two additional functions which did not emerge in the survey and which will be important in the future. First, the systematic collection of stories relevant to a particular self‐help group is a valuable research resource. It can furnish a broad and rounded perspective which cannot be obtained by other means. Secondly, the experience of telling and collecting stories will develop the ability of patients to contribute to the planning and interpretation of research on the conditions that concern them. This approach could greatly reinforce the efforts of the international Cochrane Collaboration to involve consumers in the work of reviewing and planning research on the effectiveness of interventions in health care.

The resources which will be made available through the DIPEx database could be used by self‐help and voluntary groups to help inform the public, promote awareness and lobby for improvements in the health care system. Support groups fulfil a wide range of functions for many people; the DIPEx project aims to complement a few of these by collecting and analyzing narrative interviews from a sample of people who have experience of each condition included in the database. The summary of these accounts, selected to represent the widest practical range of experiences, will be presented with video and audio clips of the interviews. The full recorded, transcribed and anonymized interviews will be available to those who wish to explore particular research questions or examine the data in detail. Other sections of the database will include descriptions of treatments, current research evidence, links to the Cochrane Library and details of support groups concerned with the condition. The links to support groups are particularly important for people who want personal contact with others with the condition. Groups give important support to patients and families that information alone cannot provide.

The results of the survey are important because they illustrate how the wide range of current applications of patients’ stories supports the main functions of self‐help groups. The findings are encouraging to the DIPEx project’s efforts to collect illness narratives in a systematic fashion from patients with a wide range of conditions in order to ground patient information, professional education and research in the illness experience.

The DIPEx group is preparing a manual for researchers who are planning to use compatible qualitative methods and may wish to collaborate in developing a website based on the analysis of interviews, presented with evidence‐based information about the effects of treatments. We hope that support groups will contribute to the development of DIPEx sites relevant to the conditions that concern them and use DIPEx to access an analysis of a wider range of experiences of conditions and treatments than might be available through their own members.

Acknowledgements

The authors wish to thank Pat Whalley of the College of Health for assistance in data collection, Pamela Baker for administrative help, Jessica Ziebland for help with data entry, and all the organizations that took part in the survey and gave us valuable information.