Being a patient who has suffered from chronic illnesses I have been routinely disappointed (with one notable exception) by my ability to get sound information for the myriad of side and consequential effects of treatments I have received over nearly a decade of illness. It seems consultants are too specialized and the GP lacks the education or experience to match the degree of understanding either of new treatments or of clinical care. I am speaking below in broad generalizations below, but I believe the statements are accurate and reflect most patient experience.
While this manifesto is currently in the early stages of development, its intention is to set out a general framework that would allow these issues to be addressed.
Informed consent is a mockery, in my opinion. Patients don’t understand it – and saying ‘generally don’t understand it’ is an enormous understatement. Fundamentally, informed consent lacks entirely the component of a patient’s understanding of what is happening to them other than the most cursory information and possibly the name of the procedure to which they are about to sign for and agree to. To this end, I very much doubt that the doctor actually understands the legal requirements and despite efforts to simplify them, it remains true that the wording has been made shorter, but not more intelligible to the layman in the sense of giving a patient a clear understanding of what to expect – it doesn’t happen.
Usually questions such as: What if…? are passed on presumably to the next level (eg. GP, nurses, etc) leaving them to inform the patient. The truth is that while the industry works on clinical safety it has forgotten the human element of medicine – What does the patient do if…? What does the patient do… if they get home and this hurts or that is tender, they can’t evacuate their bowels easily… too easily… they seem uncontrollable? Eat certain foods? Drinks? Sit? Lay? Have sex? If they suddenly feel pains previously unknown in their back, abdomen, kidneys, etc? A little blood in the urine, a lot of blood in the urine? That thick gel like substance covering the wound … is that supposed to happen? Is it clean and properly disinfected? How do they know? They don’t. They wonder and worry and worry and get an appointment with their GP or practice nurse who usually has little understanding of the procedure performed in the hospital in this day and age of hyper-specialism and how could they? The surgeons themselves sit way over the heads of GP’s, never mind the patient and the patient feels fearful, misunderstood, frightened and alone.
Having said this, clearly the industry focuses on clinical responsibilities and improving procedures so that only 1 in 300 patients in the UK dies in hospital today after surgery but only 1 in 10 million die from airplane related incidents (Gawande). Doctors have limited time and lots of pressure so dealing with some of the above noted concerns takes up valuable time that could possibly be used helping or saving
the lives of others. GPs seem afraid to admit that not only do they not know about the new procedures, but they have little if any idea of how to deal with the consequences and outcomes of an ever increasing number of procedures. All of this leaves the patient virtually alone, unless they can afford the best private health care, so they turn to the Internet, but there is no one source that carries a national or international brand that the patient can rely on to lead them through the outcomes and side effects of their treatments, ie. what to expect, what not to expect and what the patient should do in the event of….?
Patient groups exist and some NGOs and charities etc deal with certain illnesses very well because of their high public awareness, such as breast cancer, while information about other illnesses falls infinitely short of minimum requirements that are needed to handle patient concerns without putting more pressure on the health care system.
It is therefore my belief that a brand must be applied to a library of information that is disseminated via numerous mediums and which provides patients with the ability to manage their expectations and outcomes allows them to improve the quality of their lives post-treatment.
The increasing availability of online medical information has been the result of growing efforts to cut costs of health care by advocating disease prevention and self-management of chronic conditions. Sources of health information on the Internet include government portals, association websites, privately-sponsored health information sites supported by direct-to-consumer advertising, and consumer-produced sites such as personal websites, blogs, and online discussion forums. The growth of these accessible and inexpensive online sources of information, compounded by shortages of general practitioners and time constraints experienced by patients during medical consultations, have led to patients’ increased reliance on the Internet for information and advice on medical topics.
Health care consumers’ use of the Internet for health information has grown substantially in the past few years. Eighty percent of American Internet users, or some 113 million adults, have searched for information online in 2005 (Fox), an increase from 62% of Internet users, or 73 million Americans, in 2002 (Fox and Rainie). I am not an academic and I am not certain of the veracity of these and similar findings, but each study I cite below, I found on the Internet or found in my recent readings – I am relatively new to this and on a steep learning curve. In one study, between 7% and 32% of those using the Internet for health information reported that using it affected a decision about their health or health care. Internet users with chronic diseases are more likely than users with acute illnesses to use the Internet to access health-related information.
It has become increasingly common for patients to bring information found on the Internet to their visits with health care professionals; most of this information is either about pre-operative procedures or
operations themselves and few focus on post-op care. One major U.S. household survey found that 50% of respondents who found health information on the Internet took this information to consultations with their physicians. Eighty-five percent of physicians surveyed in one national U.S. survey had experienced a patient bringing Internet information to a visit (this comes from the Surgeon General’s website in the Washington, DC).
The emergence of health information on the Internet and other computer applications assisting patients in health-related matters has led to the development of a new field, which I have only recently discovered called “consumer health informatics.” This branch of health information studies health consumers’ needs, preferences, and uses of computerized information systems and examines the effects these systems have on patients’ participation in managing their medical concerns. Replacing “patient” by “consumer” in this context signifies a growing awareness of the role of patient choice and responsibility. Consumer informatics is thought to increase patient self-efficacy, which is the “confidence in remaining independent and being able to make treatment decisions” by increasing “evidence-based patient choice” and putting more treatment information and decisions in the hands of patients. This, however, has not been reflected in the post-op care and/or the treatment of various treatment outcomes.
There has been increasing debate about the effects of the Internet revolution on health care and, in particular, on the physician-patient relationship. Because the Internet provides laypersons with access to information that has traditionally been available only to experts, some argue that the Internet is helping health consumers to become more empowered. This paper examines the relationship between Internet information and patients’ empowerment in the context of the health care encounter. By reviewing the literature on the effects of the Internet on the physician-patient relationship, this work assesses the impact of the Internet in mediating power relations between physicians and patients and altering the way each experiences the clinical encounter – either before or after. Implications for information professionals are discussed with respect to the changing dynamics of the health care encounter brought about by the use of online health information.
Using a simple Google search using the keywords Internet, Empowerment, and Consumer Health Information, Pre and Post Operative Care/ Symptoms and Post Treatment Symptoms, statistics were searched using government websites around the world but predominantly Anglo and Hispanic websites. Studies were included if they dealt with the impact of information—specifically the Internet—on physician-patient interaction, both pre and post treatment and during recovery. Studies examining access to health information and its relationship to patient empowerment pre and post treatment, consumer health informatics, shared decision-making, or informed choice were also included. Articles describing electronic medical records, individual web portals, or patient-provider communication tools were also included – but not extensively.
Information and Empowerment
Traditionally, patients received information about diagnosis, prognosis and treatment primarily from physicians. Patients from previous generations generally did not challenge physicians’ advice, nor did they question prescribed treatments. In this hierarchical model, patients were passive recipients of information that was filtered and dispensed by health care providers. The past ten years have seen a shift away from this model of “benevolent paternalism” and towards a model of shared decision-making in which the “informed patient” takes an active role in his or her health care. Patient engagement in decision-making is increasing due to broader access to information, increased patient autonomy, and patients’ ability to acquire the tools to research clinical conditions and interpret medical data. A revised physician-patient relationship has grown out of this new model of decision-making in which the physician recognizes the need of the patient to make an “informed choice” and to participate as a partner in interpreting medical information and selecting treatment options.
It has been argued that access to information is a source of patient empowerment.
“Patient empowerment” is a term that refers to a patient role in which the distribution of power between physician and patient has been altered in such a way that patients are able to “take charge of their health and their interactions with health care professionals”. Importantly, two types of patient empowerment are to be distinguished: empowerment in the context of the patient-provider interaction, in which knowledge, values and power are shared; and empowerment from the point of view of the patient, which is seen as a process of personal transformation. It is asserted that the emergence of the informed consumer who is able to analyze and assess expert knowledge signifies the notion of a “reflexive actor” who is empowered by his or her sense of agency – although they normally come up against a huge shortage of professional, accurate information which has been branded in such a way to establish its veracity and reliability. The informed patient uses the Internet to find second opinions, interpret symptoms, seek support, help interpret physicians’ advice, and formulate questions for subsequent visits. In doing so, she “breaks down the monopoly of medical knowledge by professionals,” thereby increasing the amount of control she has over the management of her disease.
There are several constraints on the notion of patients being empowered through increased access to information. Much of the discourse around patient empowerment presupposes that people want to be more educated about health care options. Because of the emotional pressures involved in making complex health decisions, and the cost and time involved in researching treatments, patients may feel more comfortable leaving certain decisions to professionals. Many patients lack the critical appraisal skills necessary to understand and interpret medical data, leading to confusion and misinformation. This risk is especially true on the Internet, since many websites lack clear markers of authorship or credibility.
The Effect of the Internet
Studies on how the Internet affects patients’ experience of empowerment within the clinical encounter have shown mixed outcomes. In a study of people newly diagnosed with cancer, participants reported that getting Internet health information helped them talk to their physicians, made them feel more confident in asking questions, and helped them feel empowered to make decisions. Patients using a weight-loss drug were better able to manage their condition by recognizing and monitoring symptoms, managing acute episodes, using community resources, and controlling negative emotions and responses to illness. Patients felt that they could use the information they found online to propose to physicians that they try the latest, most up-to-date treatments. In a qualitative study of men with prostate cancer, the use of the Internet allowed respondents to feel that there was “something they could do” to control the course of their disease. Searching for online health information also allowed them to experience a sense of agency by being able to use the information they retrieved to help others dealing with the same condition.
Despite patients’ desire to use the Internet for health information, some patients are reluctant to discuss this information in the clinical encounter. In a study of women seeking information about hormone replacement therapy, participants worried about appearing to over-step the boundary between “expert” and “patient,” were reluctant to challenge the doctor’s expertise, and were wary of putting unnecessary
pressures on the busy practitioner – particularly when concerned about active and post therapy symptoms and outcomes. Another study found that while patients actively searched the Internet at home, once in the doctor’s office they “gave up the searcher attitude” and assumed roles of passive receivers of information. These patients preferred not to reveal that they used the Internet because of the negative reactions they anticipated receiving from physicians – and these are real concerns I have felt myself endlessly. These results support the view that while searching the Internet is often personally empowering for patients, this sense of empowerment does not necessarily translate into self-efficacy in interactions with health care providers and improvement of post treatment and operative outcomes and side effects.
Many patients encountered resistance from physicians to discussing online health information. Some patients noted that when the information they found did not coincide with the physician’s views, their GPs “decisively rejected or dismissed” their findings. Some physicians dismissed patients’ acquired knowledge in attempts to assert their authority, leading patients to be cautious in challenging their physicians’ opinions. Patients’ online searching could result in physicians showing hostility or irritation, in some cases labeling persons as “over-informed” or “problem patients”.
Some physicians have expressed skepticism or frustration with the use of Internet health information in medical consultations. A study of oncologists found that 54% of physicians perceived the Internet as having a negative effect on patients and/or the physician-patient relationship. Physicians attributed this effect to the confusion, anxiety, and false hopes generated by patients searching for information online and expressed frustration at having to “re-educate the patient”. Ahmad et al. conducted focus groups with 48 family physicians and found that physicians worried that the Internet was generating patient misinformation, leading to confusion, distress and inappropriate self-treatment. A frequent concern was that low health literacy made it difficult for patients to understand and interpret health messages and that patients were being unwittingly exposed to poorly organized and unreliable sources. Physicians worried about the time-consuming effort required to contextualize and interpret information for patients. Other concerns have been inappropriate self-diagnosis and the Internet’s role in feeding the worries of patients with hypochondria. Physicians’ lack of familiarity with popular health information sites was another source of frustration. This “reversed information gap” was cited as exerting extra pressures on the physician, leading to strain in the doctor-patient interaction.
Some physicians described the Internet as having a positive effect. In one large U.S. National survey, 75% of physicians considered the increase in health information on the Internet to be “a good or very-good thing.” Thirty-eight percent of physicians believed that bringing Internet information to the consultation had a “beneficial effect” on the encounter (Murray et al., “U.S. National”). In a study on oncologists’ views of Internet use, 36% of physicians stated that the Internet had a positive effect on their patients and/or on the physician-patient relationship. They believed the Internet strengthened the relationship by leading to open discussions about information obtained from the Internet and helping patients feel more in control of their health. Practitioners also noted the Internet’s ability to give patients opportunity to have “more equal, intellectual discussions”. Seventy-five percent of physicians in the same study agreed that the Internet increased patients’ understanding of their disease, though discussing Internet information was thought to add an average of an extra 10 minutes to a clinical encounter. Oncology is one of the better-served illnesses from a patient information and outcome point of view. Good resources do exist for this because of its high profile and significant number of patient groups formed pre and post treatment.
Whether health information found on the Internet is empowering for patients appears to depend on patients’ personal use of the information they retrieve as well as on physicians’ responses to these patients. While searching for online health information helps patients become pro-active and more self-reliant in managing illness, it does not necessarily facilitate communication in the clinical encounter. Patients may be hesitant to appear to “challenge” medical authority by initiating conversations about Internet information. Furthermore, physicians may not be open to dialogue as a result of frustrations and misgivings about the usefulness of online searching. Patients’ reports of feeling more empowered, and physicians’ reports that the Internet allows them to have discussions with patients on a more equal level, suggests that the Internet is playing a role in altering the traditional power imbalance in the patient-provider relationship, thus significantly affecting the way health care decisions are made and the way patients experience treatment within the clinical encounter.
A Role for Health Outcome Libraries and Librarians and Information Dissemination
The evolving physician-patient relationship suggests an expanding need for libraries, librarians and information specialists working in medical settings. There should be little need for the patient to acquire, organize, retrieve and summarize information as this is a role in which such information specialists can be particularly useful for both patients and doctors.
My proposal is this: the public needs more information on both the positive and negative outcomes, side effects and anxieties they feel and they need it from branded and highly respected resources that will give them confidence in the information they are receiving. The information needs to be disseminated from as many mediums as possible, initially focusing on the most under-represented illnesses and treatment while the virtual library is being constructed.
I propose the information resources available should include lecture series, panel discussions, patient seminars, pamphlets, posters, national newspapers, public awareness campaigns up to and including the use of television documentaries or “webdocs” (short 3-10 minute online web documentaries). Using clinical librarians and accredited “informationists” is one way hospitals and clinics could mitigate the frustrations encountered in the health care relationship and help provide access to quality information for patients and family members. “Informationists” could help patients and families understand medical jargon and work individually with each patient to assess their information needs in the context of a particular illness or diagnosis and post treatment outcomes.
Libraries could serve as “informediaries” between the patient and physician, helping patients to take part in shared, informed decisions with health care providers and help the patient better understand their pre and post treatment care. In this model, the library could act as mediator between the patient’s desire to use information sought online for best practice and managing their expectations, and the physician’s need to vet this information and interpret it for the patient. This library would be somewhat similar to knowledge translators, being primarily responsible for translating medical jargon and helping patients convert health information into useable knowledge.
While the Internet has the potential to transform access to health information by increasing patients’ sense of satisfaction and empowerment, it may also cause difficulties within the context of the physician-patient encounter. The Internet is not enough. Its empowering nature is constrained by the ability of the public to comprehend and appraise information found online and by physicians’ receptiveness to and support of patients who want to be more informed.
Information professionals’ roles will need to change to address the increased need for mediation between patients and providers, and to facilitate shared treatment planning. Librarians and health professionals—including nurses, pharmacists, and other members of the health care team—can use the Internet as an opportunity to clarify information and relieve anxiety, thus potentially strengthening rapport with patients. Patients’ use of the Internet for health information will continue to evolve, empowering both physician and patient and, ultimately, shaping a new orientation to health care based on communication, education and shared knowledge.