Although I asked many questions and did on-line research before deciding to go ahead with surgery, I was utterly unprepared for the seriousness of some of the complications I suffered which, it must be said, are relatively common. What should I have done to be better prepared? How could I have been more thorough with my research?
I backtracked my steps and reviewed the websites I had used to help me learn more about pancreatic laparoscopy or distal pancreatectomy. Some examples of pages I used are:
1) eHealth Forum – This site, and other similar forums, give you a good sample of individual experiences. Although you do learn about the types of possible complications and some specific treatments, it is difficult to get an idea of the probability, seriousness and most likely outcome of the possible complications.
2) Georgetown University – I found this site, and other university and hospital web pages, very helpful since the information is well organized and very structured. At the same time, although there was a thorough list of possible complications, neither the probability nor the seriousness or the consequences, were specified.
3) Annals of Surgery – I have listed this website to represent the large number of medical papers available online. I found this to be a good source of statistics regarding types of surgeries performed, types of complications and likely outcomes. However, the intended audience for these papers is doctors and researchers, which makes it difficult for the average person to follow.
I had used all these different resources and then tried to piece all the bits of data together to make an informed decision. I know that undergoing surgery was the right decision – there seems to be a general consensus regarding the importance of removing any pancreatic tumor, whether benign or malignant – but I had not managed to piece the information together to prepare me for what happened as a result of it. Is there a website that could have helped me further?
While pondering this question, I stumbled upon PatientsLikeMe. This company, (5) co-founded in 2004 by three MIT engineers (brothers Benjamin and James Heywood and longtime friend Jeff Cole). It has been recognized in Fast Company’s 2010 50 Most Innovative Companies in the World and again featured as a new MIT Technology Review 50 Company in 2012, only two of the many awards and mentions PatienstLikeMe has received since its inception.
It covers over 500 chronic conditions from depression and epilepsy to ALS and MS. It does not cover the type of issue I was researching (i.e. surgery of a benign pancreatic tumor) since it is not a chronic condition but I wanted to test the concept. What can you do in this website?
1) Members report their personal experiences over time both from a qualitative and quantitative perspective. For example, you can log your condition, when it developed, current and past symptoms and their evolution, medicines used (including amount and cost) and many other useful bits of info. This allows for somebody with a similar condition and evolution to directly learn from another person’s experience over time and even contact him / her to exchange ideas.
2) Users are also asked to numerically describe the severity of their symptoms, along with the benefits and side-effects from the medicines they are taking. This allows the website to build ‘statistics’ on symptoms, medicines and any other relevant piece of information. This information is displayed in a very friendly, usable and easy to understand manner.
As an example of the power of this information gathering process, PatientsLikeMe has published a patient driven study – based on data contributed by 596 patients it refuts a previous paper suggesting that lithium could help people with amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease). The findings, published online in the journal 'Nature Biotechnology', highlight how social networking could play a role in clinical trials and enable patients to explore medical questions most relevant to them. Jamie Heywood the PatientsLikeMe Co-Founder Stated, “While not a replacement for the gold standard double bind clinical trial, the platform can provide supplementary data to support effective decision-making in medicine and discovery. Patients win when reliable data is made available sooner.” Many in the scientific community, such as Lee Hartwell (Nobel Prize in 'Physiology or Medicine' 2001), have praised this initiative and believe “the approach has tremendous potential.”
Just as impressive is the fact that the founders, as part of this study and using the wealth of information shared by the site’s members, have built models that predict disease progression in individuals with certain characteristics, incorporating variables like age, gender, disease severity and time since diagnosis. Although this is still being debated, the company defends that these models allow researchers to predict the course of an individual’s disease more accurately than the standard prognostic tools. “We can predict when a patient will die 16 months ahead of time, compared to the typical doctor report of ‘you have two to five years to live’”, stated Heywood.
Obviously, PatientsLikeMe is only possible because of user commitment to the site, which is likely to be highest among chronic patients who, over time, need to develop into expert patients to best manage their condition. It will be difficult to motivate ‘transitory patients’ (i.e. those that, after a few months of convalescence, will make a full recovery) to become as involved in data gathering and analysis but, at the same time, it would be just as helpful and relevant.
I backtracked my steps and reviewed the websites I had used to help me learn more about pancreatic laparoscopy or distal pancreatectomy. Some examples of pages I used are:
1) eHealth Forum – This site, and other similar forums, give you a good sample of individual experiences. Although you do learn about the types of possible complications and some specific treatments, it is difficult to get an idea of the probability, seriousness and most likely outcome of the possible complications.
2) Georgetown University – I found this site, and other university and hospital web pages, very helpful since the information is well organized and very structured. At the same time, although there was a thorough list of possible complications, neither the probability nor the seriousness or the consequences, were specified.
3) Annals of Surgery – I have listed this website to represent the large number of medical papers available online. I found this to be a good source of statistics regarding types of surgeries performed, types of complications and likely outcomes. However, the intended audience for these papers is doctors and researchers, which makes it difficult for the average person to follow.
I had used all these different resources and then tried to piece all the bits of data together to make an informed decision. I know that undergoing surgery was the right decision – there seems to be a general consensus regarding the importance of removing any pancreatic tumor, whether benign or malignant – but I had not managed to piece the information together to prepare me for what happened as a result of it. Is there a website that could have helped me further?
While pondering this question, I stumbled upon PatientsLikeMe. This company, (5) co-founded in 2004 by three MIT engineers (brothers Benjamin and James Heywood and longtime friend Jeff Cole). It has been recognized in Fast Company’s 2010 50 Most Innovative Companies in the World and again featured as a new MIT Technology Review 50 Company in 2012, only two of the many awards and mentions PatienstLikeMe has received since its inception.
It covers over 500 chronic conditions from depression and epilepsy to ALS and MS. It does not cover the type of issue I was researching (i.e. surgery of a benign pancreatic tumor) since it is not a chronic condition but I wanted to test the concept. What can you do in this website?
1) Members report their personal experiences over time both from a qualitative and quantitative perspective. For example, you can log your condition, when it developed, current and past symptoms and their evolution, medicines used (including amount and cost) and many other useful bits of info. This allows for somebody with a similar condition and evolution to directly learn from another person’s experience over time and even contact him / her to exchange ideas.
2) Users are also asked to numerically describe the severity of their symptoms, along with the benefits and side-effects from the medicines they are taking. This allows the website to build ‘statistics’ on symptoms, medicines and any other relevant piece of information. This information is displayed in a very friendly, usable and easy to understand manner.
As an example of the power of this information gathering process, PatientsLikeMe has published a patient driven study – based on data contributed by 596 patients it refuts a previous paper suggesting that lithium could help people with amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease). The findings, published online in the journal 'Nature Biotechnology', highlight how social networking could play a role in clinical trials and enable patients to explore medical questions most relevant to them. Jamie Heywood the PatientsLikeMe Co-Founder Stated, “While not a replacement for the gold standard double bind clinical trial, the platform can provide supplementary data to support effective decision-making in medicine and discovery. Patients win when reliable data is made available sooner.” Many in the scientific community, such as Lee Hartwell (Nobel Prize in 'Physiology or Medicine' 2001), have praised this initiative and believe “the approach has tremendous potential.”
Just as impressive is the fact that the founders, as part of this study and using the wealth of information shared by the site’s members, have built models that predict disease progression in individuals with certain characteristics, incorporating variables like age, gender, disease severity and time since diagnosis. Although this is still being debated, the company defends that these models allow researchers to predict the course of an individual’s disease more accurately than the standard prognostic tools. “We can predict when a patient will die 16 months ahead of time, compared to the typical doctor report of ‘you have two to five years to live’”, stated Heywood.
Obviously, PatientsLikeMe is only possible because of user commitment to the site, which is likely to be highest among chronic patients who, over time, need to develop into expert patients to best manage their condition. It will be difficult to motivate ‘transitory patients’ (i.e. those that, after a few months of convalescence, will make a full recovery) to become as involved in data gathering and analysis but, at the same time, it would be just as helpful and relevant.
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