Patient participation in service improvement: the initial Measures Project experience

The setting

The National Health Service (NHS) in the UK was created in 1948 and celebrated its 50^th Anniversary in 1998. The underlying principle of the NHS was that if an individual was ill or injured there would be a national health service to help and that access to this service was to be based on need and need alone.

Within the current structure of the NHS there are ‘commissioners’ and ‘providers’ of services. Some organizations may be both commissioner and provider. Providers are based in a number of settings: hospitals, clinics and general practitioner surgeries are amongst the most common. In 1990 the concept of individual hospital ‘Trusts’ was created. These cover a number of sectors: acute services (those which generally require medical or surgical interventions); community services (those services required on an ongoing basis, normally in a community setting); and mental health services learning disability services.

Some Trusts cover a number of these sectors, some Trusts cover one.

Pinderfields and Pontefract Hospitals NHS Trust

The organization provides mainly acute hospital services from five hospital locations in the county of West Yorkshire, UK. It has 1100 in-patient beds, plus dedicated day surgery units, and operates over 110 out-patient clinics, held at all the hospitals and in health centres and general practitioner surgeries on an out-reach basis. Over 4000 staff are employed, together providing services for a population of approximately 400 000.

The Trust has close working relationships with 45 GP (primary care) practices, and has a geographically coterminous boundary with Wakefield Metropolitan District Council, a local government organization, which provides social, educational and other complementary services.

The project and its scope

Measures is a 2-year, part-funded European Community project.¹ It began in March 1998 and has, as its primary foci, the aims of continuing to improve the quality and efficiency of patient care:

• by re-examining healthcare processes and;

• determining how best to take advantage of information technology.

In practice, this aim is being achieved in a number of ways, by:

• implementing an integrated healthcare process;

• helping clinicians and their team identify and use the relevant measures of performance necessary in ensuring patient care in the future.

A central part of this has been patient involvement in the project. Initially the project is focused on aspects of rheumatology, diabetes and spinal injuries services based across Pinderfields and Pontefract NHS Hospitals Trust.

The emphasis of this article is upon the rheumatology service, particularly the out-patient and primary care components of services to people with inflammatory arthritis (including rheumatoid arthritis); and similar activities are underway in the other services within the scope of the Measures Project.

Rheumatoid arthritis

Rheumatoid arthritis (RA) is a disease characterized by progressive destruction of joints. This process results in loss of function and consequently loss of earning capacity and ability to perform activities of daily living. Although the incidence rates of RA are relatively low – a figure of 0.04% per year has been put forward²– because RA is a chronic condition the prevalence in our communities is relatively high. An estimate based on the study of two towns in the British Isles has put prevalence at 3.8% for females and 1.7% for males.³ Based on these figures a reasonable estimate of those with the condition in Britain would be 1.4 million.

To the clinician, the familiar face of RA is of deformity and disability, with functional deterioration.⁴ There is also accumulating evidence of increased mortality in patients with RA^{5, 6} although these have usually been attributed to illnesses other than RA in sufferers, such as ischaemic heart disease and pulmonary disease. The increased comorbidity has been described as a ‘side-effect’ of the primary illness. The prognosis in some patient subsets with RA has been described as comparable with that of certain malignancies such as Hodgkin’s disease.⁵ From any perspective this condition is therefore not only a significant problem in terms of morbidity and cost, but now also of mortality.

Such clinical effects are reflected in the profound social and economic sequelae that are now recognized amongst the effects of RA. The presence of chronic inflammatory disease and residual functional deficit has implications for the psychological status of the patient even in the early stages of the disease. In a study addressing these issues,⁷ psychological stress level was increased four-fold at 2 years in a cohort of patients studied prospectively. Even in this relatively short time, limitation of ability to shop, work at home, and engage in leisure and social activities were negatively influenced by disease in greater that 50% of patients. Furthermore, 28% of patients had lower income at the end of the study, and 37% had taken early retirement attributable to RA. These findings are consistent with a previous survey⁸ in which 63% of respondents experienced major adverse alterations in their psychosocial status and the mean income was less than 50% of that predicted for age and sex matched controls.

To the costs in terms of loss of social activity and of personal income must be added the cost to carers and the community^{9, 10}, and it is in this context that patient participation in service and process review is conducted.

In order to address this, at the heart of the Measures rheumatology team approach were three key criteria: (1) early identification and treatment of patients with early RA; (2) better management to produce superior results in terms of function¹¹ and effective pain relief; and (3) efficient sharing and use of information between all parties in the process and particularly access to serial data.

The importance of primary care practitioners

In addition to the vitally important emphasis placed on patient participation in the review of out-patient processes, one of the most important contributors to the continuity of managing chronic conditions in the community setting is the GP (family physician). The project has involved GP’s in the review of processes from the outset. Dr Mathew Mathews provides a sense of local GP’s overall perception of the project to date:

Benchmarking patient expectations

A patient survey aimed at benchmarking the rheumatology service against patient expectations was a key initial part of the project; to date 120 patient surveys have been sent to patients who have recently attended rheumatology clinics. Response rates, at 63%, were very encouraging.

The questions in the survey centred on perception of quality of advice, general quality of service, and most pressing areas for change or improvement. The initial results have identified areas which the patient population perceived as both of high quality and also for attention and change. These perceptions will be considered as part of the process re-design, and associated information management implications.

Focus groups

Since 1997 the Trust has been running patient and public fora into which many issues regarding information needs have been fed. A specific patient and visitor information policy has been the result. In addition three specific Rheumatology Patient Focus Group meetings have either taken place or are planned to date. As part of the preparation for the focus groups initial contact was made at the local Arthritis Care meetings and participants were self-nominated. When a suitably representative group were identified arrangements were made to hold the first meeting. Participants included hospital person- nel, patients with rheumatic conditions, partners and carers of patients. At the initial meeting a general discussion took place airing views on the rheumatology service and patient expectations. Participants were asked to consider for subsequent meetings issues such as: ways in which to measure satisfaction with service delivery; methods of meeting expectations of newly diagnosed patients; and ways in which to improve services with special focus on long-term patients.

The meetings have been highly successful and productive, generating highly useful consumer feedback, and re-enforcing the patient–provider partnership context. Elaine Fuller, one of the participants was pleased with ‘how really useful it was to attend, to contribute, hear and to share different points of view’. Many issues have been highlighted as a result of the patient focus groups, listed below are a few of examples:

• the need for greater patient awareness regarding possible side-effects of drugs;

• patients requirements for adequate information to enable individuals to make informed decisions and choices – e.g. clear, honest and easy to understand.

• continued ease of access to specialist nurse teams;

• access to up-to-date information on appropriate treatments;

• environmental issues including access, car parking and clinic waiting areas.

As these patient focus groups have been so successful it is planned to continue and expand these as a means of sharing experience from both the patient/carer and hospital staff perspective and facilitate an understanding as to how services for, and communication with patients can be improved.

Media

An article in the Arthritis News Journal N^o 82 February/March 1999, a bi-monthly magazine published by Arthritis Care (the leading UK national voluntary organization working with and for people with arthritis) has further raised the awareness of those with an interest in the condition. The Trust is actively dealing with enquiries from other areas of public service and voluntary organizations as a result.

Liaison with voluntary organizations

In addition Measures team members have presented to local meetings of Arthritis Care. At these meetings the subjects of both the Measures Project and also ways in which patient advocacy groups can shape and improve the rheumatology services were discussed. Perception as to the value of these sessions has been extremely positive.

Patient documentation

One of the most promising tangible outcomes to date is the launching of a Patient Held Record Book. This is a direct result of the broader focus group activities referred to above. The rheumatology team aim to distribute these books to selected patients with inflammatory arthritis as part of the pilot programme.

These books have been designed to increase patient involvement and understanding of their condition; simplify a route for communication and support primary care staff; provide a continuity of care record; and facilitate drug monitoring (e.g. by holding monitoring records and guidelines).

It is intended that the patient should take the record book to appointments at GP surgeries and also to hospital appointments. Space is provided within the record book for entries by GPs, district nurses, health visitors, practice nurses and other professional clinicians but also significantly for entries by the patient themselves.

The potential benefits are illustrated by Bob Sample, an active Arthritis Care group member.

Evaluation criteria will include objective and subjective assessment as to the effectiveness of this documentation in promoting the concept of participative care through patient held records.

In addition a telephone audit of patient opinions regarding the record books in the next couple of months is planned, designed to support and influence any amendments to the books: ‘in principle a very good idea’ (a patient focus group member).

A recently produced rheumatology department information leaflet has further strengthened the emphasis on partnership between the clinical team and patients in the effective management of chronic conditions, and the goal of improving quality of life. It explicitly states the objective mission of the service.

The leaflet also lists support groups, offers further information and opportunities to attend education classes.

Information technology

The use of information technology has been planned and implemented to support all the above elements, and the three key criteria. The process starts within the primary care setting – with GP and patient participating in the referral process through use of a real-time interactive referral protocol application. This supports the first aspiration of the service to appropriately identify and determine the most effective holistic management strategy, and in the longer term, aspires to fulfil the second, through easier access to serial measurement data which will be available to the multi-disciplinary care team. The ability to share this information with individual patients will add value to the patient handheld record.