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Editor’s Note: Although one could argue that this small sample of patient comments from an online newspaper doesn’t qualify as “research,” it represents an interesting methodology for further study of perceptions about health care, and provides an interesting snapshot of some of the issues that patients face when they begin to participate more actively in their health care. Although care must be taken not to draw firm conclusions due to this study’s limitations, this is just the type of information that would likely never see the light of day in traditional medical journals and, for that reason, I believe it is worthy of publishing here. Your comments and opinions are always welcome.
–CWS

Abstract

Summary:
Background and Objective: A recent Globe and Mail article reported that difficulties physicians have in communicating and establishing a mutually satisfying relationship with their patients impact the accuracy of diagnosis and treatment. This article was based upon preliminary results from a survey study of communication difficulties experienced by physicians. Responses received from the public were posted to the Globe and Mail blog, a shared online journal where people can post diary entries about their experiences. The objectives of this study were to determine if these blog responses could aid understanding of the challenges that patients have communicating with their physicians.
Methods: There were 52 responses posted to the blog derived from the respondents’ actual experiences with the health care system. Five thematic categories were created with comments utilized that were directly related to the participants’ interactions with their physicians, or their experiences and views regarding quality of care within the health care system.
Findings: Patients wanted to be involved in their health care decisions, especially when managing chronic diseases such as fibromyalgia. They stressed that more emphasis should be placed on health promotion topics such as diet, education, and body movement. Patients desired mutual respect, less stigma and disapproval of alternative treatments, and providers taking time to listen to their concerns.
Implications: The insights gained from the blog comprise a very revealing and useful form of data that can inform health policy, clinical practice, and further research.
Keywords: Health promotion, chronic illness, physician-patient relationship, blogs, shared decision making, patient empowerment,chronic illness management, participatory medicine.
Citation: Lovell BL, Lee RT. Perceptions about quality of care: evidence from a Globe and Mail blog. J Participat Med. 2011 May 2; 3:e21.
Published: May 2, 2011.
Competing Interests: The authors have declared that no competing interests exist.

Introduction

To achieve optimal quality and safety, treatment decisions between a doctor and patient should integrate the knowledge, skills, and values of both parties.[1][2] This is particularly important for patients with chronic illnesses, since much of the treatment process is provided by patients and families.[3][4] Developing an understanding of the capabilities and constraints that are unique to each patient is thus fundamental to active patient participation in their treatment plans.[3][4]

The internet has added a new and exciting dimension to the lives of patients who struggle with issues in the management of chronic illness. Blogs, online communities, and email groups are examples of web-based communication which allow participants to communicate and collaborate without having to meet face-to-face.[5][6] Many patients struggle with the emotional ups and downs of living with and managing a chronic illness, and often lack access to information and support.[7][8][9] Patients with chronic illnesses such as fibromyalgia and diabetes are known to use blogs and online communities to assist with their self-management.[7][9] These web-based resources enhance the sharing of valuable information, and can benefit health and wellbeing.[6][10] Blogs can also present rich opportunities for quality-of-life improvement as they provide insight on how patients view, manage, and cope with their illness.[5] Patients have an opportunity to learn from each other, increasing their skill and comfort level in communicating with health care providers.[11]

Policy makers and quality managers also have shown an increasing desire to understand patients’ values and priorities for their health care.[12] Having specific details of patients’ actual experiences with the health care system helps pinpoint areas for improvement in ways that standardized satisfaction measures are less able to provide.[12] What constitutes quality of care can be discussed from multiple perspectives and is vigorously debated. From the patient’s perspective, quality includes having access to care, effective and responsive communication, clear information, appropriate treatment, and improvement in health status.[12]

The aims of this study are to: 1) Find out what patients perceive to be good quality of care; and 2) discuss how the participants’ experiences and views about communication would impact shared decision making. The authors looked at these issues from the perspective of four different models of the doctor-patient relationship: The Paternalistic, Consumerist, Collaborative, and Empowerment models.[13][14][15] In the Paternalistic model the patient maintains a passive role and decisions are made unilaterally by the doctor. In the Consumerist model the doctor’s expertise may not be fully considered if the patient views the consultation merely as a service provision.[14][15]The Collaborative model provides a more balanced approach that integrates different perspectives with the intent to reach a mutually satisfying consensus between all parties.[14] The Empowerment model involves acquiring and/or applying the knowledge, behavioral skills, and self-responsibility to restore and maintain health and wellness at the highest possible level. The premise of this model is mutual respect between doctor and patient.[13]

Methods

The data utilized in this study were from 52 public comments made to the Globe and Mail blog. [16] The Globe and Mail, based in Toronto, Canada, has been in print for 165 years. It has a six-day readership total of 2.5 million, and is Canada’s newspaper of record. Readers include decision makers of households, business, and government who rely on the newspaper to take a critical look at how events affect their lives.[17] The comments posted to the blog were in response to a 2008 article titled “What Does Your Doctor Think of You?” and written by health reporter Carly Weeks.[16] This article discussed specific barriers that physicians have in communicating with their patients and how these may impact diagnosis, and was based upon the proceedings from the 2008 Healthcare Systems Ergonomics and Patient Safety International Conference held in Strasbourg, France.[18] Canada has a publicly funded health care system, although communication barriers between physicians and patients are known to exist in all types of health care systems.

In keeping with the study aims, comments were retained if they provided insight on the communication dynamic between physicians and patients, and experiences or views regarding the quality of care received. Of the 52 comments posted to the blog, 17 met the inclusion criteria. There were 35 comments excluded because they had no relationship to the aims, were based upon opinions rather than actual experiences, were unrelated to the newspaper article story, were replies in response to other blog comments, were off topic, or were derogatory in nature. A general inductive approach was then used by the first author to categorize the 17 comments into five themes, which were created from multiple readings of the data until saturation occurred.[19] They were checked for accuracy by the second author, who agreed with the classification system and themes created. According to a personal email communication from the Globe and Mail editor, publishing comments from the blog does not infringe upon any copyright as long as the original source is provided.

Results

In this section the authors present the blog comments, which have been grouped into the five themes. Where possible, the types of doctor-patient relationships are discussed, and how shared decision making would be impacted.

Health Care Maintenance

The three blog comments presented in this section indicate that patients feel there is overreliance on medication. These patients are highly empowered with the belief that high quality care should consist of providing information on alternatives to medication when appropriate.

  • “The reason why people hide their alternative treatments from the medical establishment is doctors’ extreme narrow-mindedness in that direction. Nutrition, sleep, physiotherapy, body movement and yoga are so important — most doctors don’t address it. For example I had some pregnancy sciatica problems which a doctor might have prescribed painkillers, but I did some research and ended up fixing it with about four minutes of yoga once I found the right pose.”
  • “99% of the time the clinical action taken is to prescribe, not to help patients make meaningful life changes by working with other clinicians (dietitians, psychologists, physiotherapists).”
  • “Just look at all the money our society spends to unnecessarily medicate people. All the while most people just had to eat well and get a little exercise.”

Health and Illness Management

Society, education, and technology are advancing, which has resulted in patients who are actively involved in decisions regarding their health care. The first two blog comments are examples of the Empowerment and Collaborative models, with patients recognizing the importance of sharing information.

  • “People are 100% obligated to research and take charge of their own health. I believe common kindness and respect is important, but it is also important for patients to have critical thinking. We need to take responsibility and take their expertise into our decisions but the ultimate decision for care is our own decision.”
  • “If you want help then you have to be forthcoming with all the relevant information and give up your preconceived ideas about what is wrong with you. You may find that the Internet doesn’t always get it right.”

The next two comments are examples of patients who feel highly empowered, but perhaps less trusting and more inclined to follow their own independent decision-making process.

  • “Doctors should be more humane and better educated so that they help not hinder the treatment process the patient chooses for themselves.”
  • “We must realize that our current health care system can’t keep up with our health needs. It’s important to realize we have other options and it’s time we take responsibility for our own health.”

Chronic Illness Management

The first blog comment describes the difficulties associated with shared decision-making for chronic illnesses such as fibromyalgia that have unknown origins or cures. Both patients in the second and third blog comments are highly empowered. However, only one was able to achieve a Collaborative relationship with his/her doctor.

  • “The most frustrating thing for both doctors and patients are chronic diseases that today’s medical system cannot solve. These include fibromyalgia, irritable bowel syndrome, chronic fatigue, and chronic pain. GP’s try things that don’t work, patients lose trust, and find therapy on the net that may or may not be appropriate.”
  • “I have fibromyalgia, MS, and a variety of other diseases that have left me confined at home and often in my bed. I shopped for a GP needing compassion, support and good rapport. I found that doctor, we have a close relationship, we communicate, she has admitted that she does not know and will talk to her colleagues. She respects me and the research I have done on my body and I share that information with her. She supports alternative methods and we work together.”
  • “The issue comes in when as an educated and communicative patient the doctor sitting in front of me is rushed or is disinterested. I have fibromyalgia and have become educated over the years. The general response to my attempts at serious conversation regarding my illness and my body has been a glazing over of the eyes. It is sad and frustrating that I have not found a doctor able to accept my knowledge and work with me…there is no cure for fibromyalgia but some help in managing it would be nice.”

The following is an example in which the Paternalistic Model conflicted with the Empowerment Model. This patient was educated and knowledgeable about his/her condition, but that knowledge was not recognized by the doctor. Without input from the patient, shared decision-making is not possible.

  • “I have a chronic condition that is well managed through diet, lifestyle, exercise, and medications and I see three physicians regularly. My family physician had an intern for training and asked if I would mind being examined by her. For some reason my blood pressure had unexpectedly jumped, and the intern immediately jumped on wanting to prescribe additional (new) medication without having understood my history. She started to try and educate me on hypertension ( had she read the history or asked a question or two, she would have realized that I am at least as knowledgeable on my condition and probably more so.) It was clear to me that she was following the script that she had been taught in school. I became one of those patients skeptical of the doctor, and refused to have anything more to do with her. A slight increase in one of my existing medications took care of the hypertension, rather than starting me on a new regime with all sorts of fun side effects. I was more knowledgeable, something the young doctor didn’t want to acknowledge.”

Constraints to Relationship Building

The following comments describe how a lack of quality time with the doctor can place constraints upon collaborative decision making.

  • “I have a terrific family doctor, but I have to put up with her idiotic staff, cramped wait room and scheduling restrictions.”
  • “GP offices don’t hire enough support staff to handle their phones, undependable appointment times, and brief cursory visits resulting in a prescription and a shove out the door does not qualify as offering professional clinical care.”

Enhancing Relationship Building

This comment demonstrates that understanding and consideration are dual processes that both physician and patient should engage in to achieve the best possible participatory health care, and is one of the key characteristics of the Empowerment Model.

  • “One of my surgeons is often very late. I remember sitting in his waiting room and all the patients were getting angry. I told the ladies in the waiting room that possibly he has just diagnosed a woman with breast cancer, his specialty. I suggested that if they were receiving that kind of news would they appreciate a doctor spending time with them and comforting them. That said there were no more complaints. Mutual respect is key.”

While this comment may be more indicative of a consumerist attitude, the writer agrees that it is important to build a positive relationship which may signify that a Consumerist orientation still recognizes the need for collaboration to achieve goals.

  • “In all service industries (of which medicine is one) people really need to think about what kind of attitude they are approaching the service provider. Do you yell and make unreasonable demands? It’s always far better using honey and not vinegar in getting people to want to help you.”

The following statements describe how consideration of the patient’s point of view results in a consensus that each party can agree to, supports shared decision making, and demonstrates the Collaborative Model:

  • “I work in health care and have witnessed patients telling me what’s wrong and what they want me to do about it. However in about 90% of those cases they do know what they are talking about or can be convinced otherwise if you can take the time to rationally explain your treatment plan. If doctors took more time to listen they might understand that some patients do know more about what’s going on in their own bodies than one might think.”
  • “In my experience, female professionals are better communicators and less self-centered than males, so they make fewer mistakes or decisions that negatively affect patient interests.”

Discussion

Evidence has suggested that patients are most concerned with aspects of health that impact their social and emotional functioning, daily life, pain, and disability.[12]The participants in our study have stressed that comprehensive medical care should include treating the “whole person” and not just the physical aspects of their illness. With better access, education, and health promotion efforts, patients will likely continue to integrate complementary forms of health care into their treatment regime.

Research on this topic is still in its infancy with few studies published in this area.[11] While some participants responded to the findings discussed in the newspaper article, others saw this as an opportunity to share their own experiences and types of communication that they had with their physicians. In the process of reading blogs health care decision-makers and health care providers may encounter some outlandish comments; however they can also be exposed to information not previously available, providing an opportunity to learn and gain insight.[10]In particular our study has shed light on how communication with providers influences treatment outcomes, and patient health and wellbeing.

Several study limitations of using weblogs are worth noting. First, we were unable to conduct sub-group comparisons because gender, age, education, or ethnicity of the respondents is unknown. Second, response bias was possible, as some demographic groups are more likely than others to have internet access and seek health information online.[20]

In particular, women, Caucasians, adults between the ages of 18-49, and those with high income and education, are more likely to engage in web communication than African Americans, Latinos, adults living with disabilities, those with low income, older than 65, and those with high school or less.[20] Finally, although the blog used in this study was a rich source of evidence, not all will be suitable for research.

Acknowledgements

Thanks go to Toby and Melvin for their assistance throughout the duration of this study, and to the JoPM peer reviewers for their constructive and helpful feedback.

An earlier version of this paper was presented at the Conference on Communication, Medicine & Ethics, Boston, USA, June, 2010.

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Copyright: © 2011 Brenda L. Lovell and Raymond T. Lee. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

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