Intended for healthcare professionals

Learning From Patients

Cultural revolution

BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7402.1304 (Published 12 June 2003) Cite this as: BMJ 2003;326:1304
  1. Patrick Pietroni, head, Regional Education Support Unit1,
  2. Fedelma Winkler (fedelma.winkler{at}4ps.com), director, 4Ps Development Centre,
  3. Lindsey Graham, director, 4Ps Development Centre1
  1. 1 Courtfield House, St Charles Hospital, London W10 6DZ
  1. Correspondence to: F Winkler

    The UK government wants doctors to take on board patients' views in shaping practice. But how can you change the mindset of the medical profession in order to do that?

    Involving patients and the public in health care has been government policy for at least 30 years. This has, however, been left to develop, or not, in a haphazard manner, and exactly what “involving the patient” (let alone “the public”) means has never been adequately defined. This shift in policy in the NHS has mirrored the major societal trends over the past 60 years or so (see box).


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    COLWO/FOLIO MAIRA

    Notwithstanding the many excellent attempts by individual doctors to engage with patients in a more cooperative manner, little progress has been made. The fundamental shift required in moving from an “expert doctor” centred model to one focused on patients' needs is a long way away. Patients may indeed be wanting to have a say in their care, but the ensuing conversation is often more like a shouting match than an orderly discussion where each side respects the skills, needs, and status of the other.

    Preparing Professionals for Partnership with the Public (4Ps)

    The 4Ps Development Centre provides tailor made educational programmes to help healthcare professionals involve patients and the public. It grew out of work at the Department of Postgraduate General Practice in North West Thames region. Professor Pietroni asked a team of clinicians and managers to explore how patient and public involvement could be systematically translated from theory into practice. The group began work by asking healthcare professionals what patient and public involvement meant to them. They found that some were mystified, many were antagonistic, and others would “do it when we have time.” There was also a dismissive group who felt they did it already.

    Major societal trends over past 60 years

    • Loss of deference towards figures in authority

    • Knowledge explosion through popular books, media, and internet

    • Rise of consumerism and focus on patients as customers

    • Rise in litigation and downfall of doctors as heroic figures

    • Rise of managerialism that challenges professional hegemony

    The “eureka moment” came for the development team when they recognised that professionals needed to be encouraged to see how patient involvement might meet their own needs as well as those of patients. The professionals needed to be prepared. An educational programme was developed to explore with professionals how they could move from “doing to” to “doing with” patients.

    Most of the people on the 4Ps team are practising clinicians and managers who have a passion for enabling staff to make small changes that bring major benefits to patients and enhance the responsiveness of the service they offer. The underpinning beliefs are that staff want to deliver responsive services, and that public involvement, to be sustainable, must be integrated into everyday practice.

    The 4Ps team delivers programmes at the request of primary care trusts, hospital trusts, departments, and networks. It increasingly works alongside other policy initiatives such as the Expert Patient Programme, the London Patient Choice Project, and the Department of Health's initiative for the sharing of clinical correspondence with patients. The programmes offered by the 4Ps team work at different levels. The sessions may focus on a professional's relationship with individual patients, on a department's or practice's systems for involving patients, or on a trust's relationship with the public and community. All begin by exploring what involvement means to staff.

    Involvement at the individual level

    At the individual level, involvement can be as simple as a physiotherapist recognising that her way of involving patients may be to encourage them to take responsibility for their own rehabilitation with her acting as their coach—doing with rather than doing to.

    When sharing clinical correspondence with patients is considered as a way to enhance involvement, it stimulates reflection on how it can enhance the professional-patient relationship. Professionals' initial reaction is often to see it as potentially damaging to patients or just another government initiative that causes extra work. “I could not possible share letters with patients because in my specialty the prognosis is too poor”—consultant physician. This doctor's concern led to a review of the patient literature in the specialty. The evidence from the review gave the doctor the confidence to explore how she could introduce sharing correspondence into her clinic. A follow up patient survey showed the patients' appreciation of the openness.

    Group discussions about the sharing of correspondence led to a review of how patients were received in the clinic, the way patients were addressed, and how bad news was delivered. All of these were stimulated by the need to ensure that any letter confirmed what was said in a consultation. The reward for professionals is in the improved feedback from patients. One patient thanked a radiologist for giving her back two weeks of life—the time she would normally have waited to get her results via her general practitioner.

    Case study

    Janet Farrell, recently retired manager of a bookmaker's shop, was following doctor's orders and walking “like a tiger stalking its prey in the jungle.” It's not something you'd normally expect to take place in the garden of a general practitioner's surgery, but Janet attends a practice in east London that has been trying to develop services more in line with what patients want.

    Her general practitioner is Tushar Ghosh, who has a 25 member patient participation group and whose practice has achieved “patient friendly practice accreditation.” Ghosh prescribes an ancient Chinese form of coordinated body movements once a week for the elderly patients at his single handed training surgery in Dagenham. Janet is chair of the group and a regular member of the t'ai chi class.

    Unfortunately, half way through the class it started to rain, so she and the other nine patients in her group had to leave the garden and prowl instead round the waiting room benches. There was much laughter and good humour, but the underlying intent was serious. The session tutor focuses on improving balance, and his goal is to prevent falls. The overall remit of the scheme, however, is a wider one. In addition to reducing injuries, it aims to improve the quality of patients' lives and to reduce their isolation.

    With this in mind, Ghosh provides tea for the group after the class. The group provides the “chit chat,” and Ted had also brought some cake to celebrate his 70th birthday on the day I visited.

    Wynn Stark, the group's vice chair, says: “We all walk out of here feeling a year younger than when we came in.”

    Ghosh says: “The t'ai chi has built a sort of community spirit among them. People don't normally come to the surgery unless they are ill, but this makes them feel at home.”

    Ellen, another group member, agrees: “You haven't got a dread of going to the doctor's like most people do.”

    The dread factor is further reduced by an annual open day in the practice garden, organised by the patient participation group, when different healthcare agencies have stalls, some with healthcare checks, and everyone has fun.

    But patient participation is not just about spreading information, it's about partnership in a wider sense, says Ghosh: “What I am looking at is community based holistic care. Health is not just medical care. People have the power together to make things happen and make them better.”

    Joy Ogden freelance journalist

    Relationship with groups

    Increasingly staff are expected to set up and attend user groups and to invite users to join committees. These are often new roles for both users and professionals, with neither side knowing quite what to expect.

    The 4Ps programme enables professionals to explore these roles. Sometimes just having time to reflect on users' perspectives enables professionals to have a more positive role. “At the user meeting, when the members confronted me with the problems they were having, I explained that it was a problem for me too, and we were able to discuss what we could do together. I don't think I would have had the confidence to respond so openly if I had not participated in the programme”—consultant thoracic and general physician.

    Staff can become alienated from user groups. The root cause can be because both sides are unclear about what is expected. On one 4Ps programme, the overwhelming issue for staff was their antipathy to the members of the user group. Many of the staff had stopped going to meetings because they felt under attack from the users. This caused further problems because the users then accused the professionals of being dismissive. Given time to explore their feelings and encouraged to reflect on the skills and experience that the users were bringing to the group, the staff gained confidence to go back and negotiate their role with the user group members. The group changed into a partnership group in which the users and professionals jointly took ownership of the agenda. They also tackled issues that had previously been of real concern to staff, such as how the group would cope with a member having a relapse or dying. “Suddenly I could see a way of moving forward with the user group. In other situations they might be the professionals; and sometimes we are patients. Seeing it as a partnership helped. We have now got more of a partnership in the group between the staff and the users”—primary care trust manager.

    Involve not alienate

    The 4Ps programme encourages staff to see the importance of small changes that they can make themselves. “I thought public involvement would be about a big project; realising it was about small things was enlightening for me”—ward sister.

    One group decided that involvement was not part of their culture. This led to a discussion about way cultures and subcultures influence delivery of care. The debate is continuing among the participants. From this the 4Ps team developed a module on the cultural context of public involvement. This gives professionals time to reflect on what is important to them when they use services, and, above all, it allows them to explore without fear of ridicule or reprisal what disturbs and distresses them about patient involvement. This time to reflect, enabling them to translate their obligations into action, makes sense to them. “Previously, we took on what the government said, but with 4Ps we were able to think through what made a difference to patients”—specialist nurse in acute trust.

    Instructions to involve patients can seem like a threat and does alienate staff. The intense scrutiny of complaints can demoralise when little value is placed on what can be learnt from compliments.

    Evaluation and sustainability

    The 4Ps educational modules were formally assessed, and an evaluation of the impact of the programmes will begin shortly. At the end of each session, participants record how they reacted to the session, and the replies are shared with the group. Participants are asked at the start of programmes to record their hopes and fears, and at the end they are asked to record the degree to which their hopes and fears were met by the programme.

    Such feedback shows that staff become enthusiastic when they are involved in the process. “I found the group work positive—a way of finding out how we as individuals can make a difference, pooling ideas and offering to help one another in each other's work”—receptionist, accident and emergency department.

    A patient friendly assessment for practices and departments has been developed. This forms the basis for evaluating the application of the programme's conclusions to actual practice. It can also be used to support the participants to spread their enthusiasm through their practice or department (see case study box).

    If we want staff to create systems to involve patients and public in the system of care, the involvement must be pragmatic, bottom up, and show clear benefits for patients and providers alike, and above all work with the goodwill of the staff.

    Footnotes

    • Contact details for the 4Ps Development Programme: Kim Cyrus, Preparing Professionals for Partnership with the Public, Courtfield House, St Charles Hospital, London W10 6DZ (Tel: 0208 962 4680. Email: jacqui.robinson{at}kc-pct.nhs.uk. Website: http://www.4ps.com/)

    • Competing interests None declared.