Partnership with patients

Patients want more than simply information; they need involvement too

Being confronted with a patient who has done a literature search, scanned the internet, made a provisional diagnosis, and knows what he or she wants from the health service is no longer a hypothetical scenario. People are becoming better informed about health, and a groundswell of support and government backing exists for the campaign being waged by consumer lobbies, patient organisations, and others for more and better information on health and for greater involvement in decision making.1

Much of the information currently available to patients is inaccurate or misleading and gives little indication of outcome and treatment options. The need to improve such material and take more account of patients' information needs was emphasised at a recent meeting, organised by the King's Fund under its “Promoting patient choice” programme.* It is also the focus of a new government funded Centre for Health Information Quality, which will coordinate and support the development of materials for patients.*

But what constitutes quality? “Patients want honest, unbiased, up to date information about their illness, its likely outcome, and the risks and benefits of different interventions,” said Dr Angela Coulter, director of the King's Fund Centre. “They also want help to identify and secure their treatment preferences. When uncertainty exists it should be discussed, not omitted or glossed over, and advice should be explicitly supported by the best available evidence.”2

Most people, doctors included, have only a sketchy idea of the information services available for patients. The National Health Information Service, is a good example. Set up in 1992 it remains underused. Calls to freephone 0800 6655 are put through to regional services which provide information about local health services, local and national self help groups, medical conditions and their treatment, hospital waiting times, voluntary organisations, health information leaflets, etc. Most also have access to the Cochrane database and the Effective Health Care Bulletins.

People vary about how much they want to know about their medical condition and when they want to know it. Some cope better with uncertainty than others. What they want when well may differ from what they want when they or their dependants are sick and vulnerable. Some may prefer to leave decisions to the health professionals. There is evidence, however, to suggest that patients want more information than they get and doctors overestimate how much they supply.3 “Assessing people's information needs, identifying treatment options and the evidence that underpins them, establishing preferences, and supporting people to make decisions is a discipline in its own right. Health professionals need to be taught this skill, which goes well beyond the current teaching of communication skills,” said Dr Angela Towle, research fellow at the University of British Columbia.

Doctors working under tight time constraints with little access to good information for themselves are in a difficult position. They may question the feasibility and desirability of providing every patient with state of the art information. They will rightly question the evidence base of this approach. Does it alleviate rather than provoke anxiety, promote self help or put more demands on stretched resources, increase effective use of limited services or increase demand from the articulate minority at the expense of the collective good? Health- care purchasers and providers may also question the cost effectiveness of providing more and better quality information for patients. Employing hospital patient information managers; producing and disseminating good quality leaflets; providing CD-ROMs, interactive videos, and touch screen kiosks in surgeries, outpatient departments, and pharmacies is not cheap. Giving better information also entails exposing more of the uncertainties in clinical medicine.

“But this is a good thing. We need more open acknowledgment that the scientific basis of many medical interventions is poor,” said Dr Jack Wennberg, of the Foundation for Informed Decision Making in the US. “Patients should know that the wide variations in practice, especially in operative procedures, are not related to need but to the advocacy and skill mix of local doctors. When patients are fully informed about the risks of intervention and their preferences taken into account, operative rates for prostatectomy, for example, which vary tenfold in the US, fall to the lowest level and costs fall.”

More open and equitable exchange is also likely to increase patient satisfaction (and hence reduce the risk of litigation) and enhance compliance. Patients are also, Dr Wennberg argued, more likely to see the need for, and agree to participate in the large randomised controlled clinical trials that are needed to assess the long term outcome of many clinical interventions.

As the rights of individuals as “healthcare consumers” are strengthened, and public involvement in debates on priority setting and rationing increase, health professionals must move with the tide. Providing people with good quality information and working with them to use it to their best advantage is in everyone's interests.