Monday, 18 June 2012

Exploring the impact of patient "googling" on the patient provider relationship in chronic illness




** UPDATE ** I posted the wrong link for the questionnaire but it should now be correct :)


Hi. My name is Maria and I am a student at Nottingham University studying an MSc in Health Psychology. I am currently conducting some research and I am looking for participants to take part in a short online questionnaire. The questionnaire takes around 15 minutes to complete, and has full ethical approval from the university. Responses will be confidential and anonymous. 
The research is interested in your experiences of seeking health information online and what experiences you have had when you have shared this with health care providers such as your GP. .





If you are interested in taking part please follow the link below. 


For more detailed information on the research please read the background information below. :) 



More and more people are using the internet to search for information on symptoms or treatment with regards to a specific disease and an increasing amount of the population use the internet to help make important health decisions.
As information on the internet is unregulated many sources of information online may be viewed as unreliable. Despite an increasing proportion of the public using the internet for health information, it still remains unclear whether this effect is beneficial or harmful, and little has been published on the consequences on healthcare providers and users on the use of the internet. 
It has been suggested that some physicians may feel patients are challenging their authority when bringing in health information obtained from the internet. Physicians have expressed concern that patients may misinterpret online information and that only qualified medical professionals may interpret this information adequately. What research must now do is discover what the impact of this is, how positive results can be obtained, and provide advice to both patients and practitioners alike to facilitate this.
Chronic undiagnosed symptoms
This study is concerned primarily with the pre-diagnosis stage, and the population focus will be on people suffering from chronic, undiagnosed symptoms (Or diagnosed symptoms retrospectively). People in this population may be more likely to seek the internet from information and bring this information to their doctor out of desperation. 
Chronic conditions which historically have a tendency to display vague, ambiguous symptoms will be looked at. For example, Multiple sclerosis, endometriosis, chronic fatigue syndrome, fibromyalgia. When symptoms continue to be undiagnosed by healthcare providers patients may turn to the internet and in some instances may find that the internet provides more information on what might be causing their symptoms than their GP, for example (Diaz, Griffith, Ng, Reinert,  Friedmann, & Moulton (2002) found that 60% of participants in their survey rated internet based information as the same as or better than information provided by their general practitioner.
 Facilitating the use of the internet and making it a positive experience for both healthcare provider and patient is of upmost importance particularly within this population. Since NHS providers are already restricted time wise and financially, pro-active patients actively researching possible problems themselves could save much time and money if this was done effectively. With particularly vague or difficult to diagnose conditions, doctors may not simply have the time or the motivation to go into such depth with regards to researching possible diagnosis as patients may, therefore, exploring the issues around internet health searching within this population would be of particular use.
Main Aims
Therefore, the main aims of this study are as follows:
  • Explore what motivates patients to seek information about their symptoms on the internet and/or present these findings to their healthcare provider
  • Explore ways this may impact upon the relationship between the patient and the healthcare provider
  • Investigate what factors lead to negative and positive effects
  • Use the findings to discuss ways in which we may improve the patient provider relationship in regards to this and provide advice on how to facilitate internet searching in a positive way for both the healthcare provider and the patient. 
** A note on the Health Anxiety Inventory **

Part of my questionnaire contains a scale known as the health anxiety inventory (or the HA1 for short). Many participants have shown concern about the use of this scale and what use it is in the study. In particular, some of you have shown concern that this scale may be being used to suggest that your illness is "not real" or that your symptoms are the result of hypochondriasis. I would like to let you all know of the reasons for having this scale in the questionnaire.

* The scale has been validated across a number of groups, but has not been sufficiently validated across groups suffering from physical illness. 

* I want to explore whether there is a relationship between high scores on this particular scale and other answers to questions

* I want to explore whether individuals with chronic symptoms, particularly those that were undiagnosed or took a while to diagnose, would score high on this questionnaire compared to healthy individuals. If so I want to suggest reasons that this may be aside from hypochondriasis. 

* I want to explore whether high scores on the HAI are more frequent in those patients who cite their doctor as not taking them seriously or not having a sufficient understanding of their illness. 

* I want to know whether high scores on the HAI are associated with how long patients take to get a diagnosis. 

* And finally any other relationships which I may have not thought of. 

My research is not concerned with the cause of illness, and, I will not be using the HAI to suggest the cause of illness. I am merely concerned with the relationships between the answers on the questionnaires and would like to discuss why these may occur, what issues may arise, and how these challenges might be dealt with. Thanks :) 






5 comments:

  1. This comment has been removed by the author.

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  2. Maria,

    It's great effort and hope it brings some fruits. It is true a lot of patients have decided to take the action themselves and take help from google. Of course it has it's dangers as a lot of information is focused on making money but there are people who are fed of their GP and doctors hence....they have no choice.

    I've certainly beenfitted from the research but I am sure there are people who have taken the wrong steps after reading all on google!

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  3. Are you going to be problematizing the notion of Aescupalian authority in the doctor-patient relationship within your study, and looking at conflict over issues of 'compliance', problems with presumptions of rationality in doctors over patients etc.?

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  4. I expect that many issues will arise especially within the qualitative part of the study (open ended questions) of how patient orientated the relationship is, and so far many patients have stated that they would much rather a more equal partnership in their health rather than simply being directed by a doctor - although this is personal preference. I am not all that familiar with Aescupalian authority but I believe that this partly to do with the notion? I have not looked at compliance as such but that would certainly be very interesting for future research, as I expect that information found on the internet will indeed impact on adherence to treatment. However, in my particular study I have focused more on searching in regards to diagnosis and symptoms rather than treatment, but I expect that some participants will bring this issue up and I will be very interested in what the patients views and experiences of this are.

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  5. My score on the anxiety scale would be high and off the scale,I'm being told that I'm clinically depressed,no wonder while all the health proffessionals are farting around(after 2 or more years I haven't been diagnosed,my illness has come along at a time of inconvenience;ie its back to work for all on any benefits);in the meantime I have suffered from acute pain have got almost desperate for relief almost begged,and my life is going down the pan.

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