Health care community with focus on "nutrition" and "exercise" to support cancer patients

The Challenge: 

The Question: 

Do cancer patients generally struggle with the information being provided on nutrition and exercise during treatment?

The Problem: 

Western health care systems solely focus on standards and general advice due to cost reductions, lack of time and strict medical guidelines.

The Solution: 

Health care community with focus on “nutrition” and “exercise”. Offer a digital space for patients to share experiences, tips and tricks.

Channels: 

In 2015 both of us have been diagnosed with different types of cancer. Ever since we were diagnosed with cancer until the end of our treatment we both were more than convinced our body could fight this and we eventually would win the battle. We were always pretty fanatic with sports and always had a focus on eating healthy. We immediately started to look for information on how to keep our body in the best shape during the chemo and radiation attack. During the first appointments we had at the hospital with a nurse specialized in cancer treatment, we received a lot of information on the treatment itself and its possible side effects. However, there was no information added on (healthy) food, which products to eat best during treatment or information on the possibility to continue exercising.

At home our search started at the internet and we looked up questions like: Is it healthy to sport during treatment? What is the best food to eat? Should we be adding supplements to our daily meals? Who can help to keep my body in the best shape?

Through the dietician working at the general practitioners office Carry got a first list of products, which could affect the treatment and also some products to prevent loosing too much weight. We did not know if we had to expect a weight loss, because that is what we all think chemo does to your bodies. What we forget is that you get a lot of medicines to fight the treatment side effects, which have again their own side effects, such as potentially gaining weight (take for example prednisone, one tends to store a lot of body liquids that could cause weight increase).

The information from the GPs dietician was not sufficient, therefore we asked for the advice of a dietician at the hospital. During the first appointment we asked all kinds of different questions, but we were shocked by the answers. Before we were ill, we ate very healthy, fresh/fair products, now we got the advice of the hospital dietician to buy ready meals in case we would did not feel well enough to cook. Or in case you would lose weight to eat artificially manufactured nutrition containing ingredients to increase weight.

Currently there are all kinds of ‘food fanatics’ and ‘health hypes’. We are convinced that healthy food should not be a trend. We don’t want to focus on trends or hypes; our focus lies at informing people about healthy food and “back to basic”. We want to reach the target group of cancer patients, to help them in finding good food to fight the battle of their life. As we experienced ourselves, medical specialists at the hospital don’t have enough time to guide a patient in the best way and many dieticians follow the ‘old’ rules and are promoting the medical food of the pharmaceutics industry.

We want to start a foundation, which will have a wide network of researchers, specialized food coaches, sport coaches and doctors to gather information and advice, on how to compose healthy menu’s for cancer patients and provide information on healthy ways of exercising during your illness. Not only in general, but also customized, for each individual. Our plan is to set up an overview listing healthy products to eat during your treatment, but also listing products, that are particularly unhealthy.

Next to that we want build up a network to reach out to people who cannot cook or are not able to exercise (or just walk) on their own. Look around to your own environment. If you were aware that there is a single man/woman, who lives a couple of streets away, which is not able to cook because he/she is too ill, would you not cook (needless to say that this needs to be in line with the advice of the foundation) for that person? This is called community care.Focusing on the hospital food will be the second target (long-term). Once we start informing patients and start working with researchers, food coaches, sport coaches and doctors, we will eventually be able to slowly change the hospital food.

Figuring out the healthiest ways to fight your battle by staying in direct contact with your target group is part of specialized care, which would be the future in health care. Not general, but focus on single patients with their own problems/questions and side effects.

Challenge

(Customized) advice serving cancer patients during treatment (chemo, radiation,…) to ensure optimal nutrition and exercise.

  1. focusing on natural instead of artificially produced ingredients
  2. emphasizing the importance of regular and moderately intensive exercise.

Channels
Short-term: online (info and community)
Long-term: face to face (workshops on two main subjects)
Activities:

  • develop and maintain a blog/website/platform with menu proposals containing healthy ingredients, working together with food coaches and researchers on this. It will be an interactive platform, on which people can also share their own experiences etc.,
  • contact points in the Netherlands on sports coaches to contact for guidance,
  • set up sports projects and readings about healthy food and sports for cancer patients,
  • create communities for healthy cooking, places where people can buy healthy food in case there are not able to cook themselves when they are very ill, or don’t have a partner.

Type of community involved

Community consists of cancer patients (no age restrictions or type of cancer)

Solution proposed; effect on users life?

Ensure optimal knowledge sharing to enable patients to continue the health-minded lifestyle of before their illness.
 
How is it open?
It is accessible to anybody online (could be perceived as restricting because the community is language specific and starting with the Netherlands!)
 
How does it ‘care’?

This platform contributes to care by offering a space where patients can share their knowledge and learn from each other concerning the subjects “healthy nutrition” and “exercise”. Also it allows easy access to expert knowledge. The platform is not supposed to replace or complement any scientific research sources. It is solely focusing on the easy access of exactly this information as well as the information shared amongst experts by experience.

Comments

Brilliant stuff!

Alberto's picture

This makes a ton of sense. Everyone says that sport and healthy food are good for non-sick people: they should be even more important for people who are sick! I, too, lead a reasonably healthy lifestyle. I do not have cancer now, but – realistically – I will at some point. And I will want the same kind of advice that you also looked for. 

I would totally support this idea! @markomanka , you are a doctor. Any thoughts?

The food paradox of hospitals

Rune's picture

As long as I remember we have been told to eat healthy / As long as I remember hospital food has had the reputation of being awful

As long as I have been having my lunches in a hospital I’ve studied posters saying: avoid saturated fat, reduce salt & sugar, prefer fibres, vegetables and fresh fruit etc.

As long as I have been having my lunches in a hospital the meals have always been salty, something fried, overcooked vegetables and the cheapest quality fruit.

So starting at the hospital we are told one thing and given the opposite.

The logical conclusion is that change should start at the hospital. It same goes for schools down to kindergardens.

 

 

Collective intelligence as cure for controversy

Noemi's picture

Nice to meet you @Denise Carry, I'm Noemi!

One of the most schizofrenic thing about medical treatments is, in my opinion, controversial advice. I always tell myself that the moment I will have a real condition I will need to ask for many many opinions in order to be satisfied with recommendations. Even with the "healthy food" trends which you remark, it is becoming harder and harder to find truth or specialists with real credentials. If hospital dieticians are in the wrong, then the only way seems to be more access to information, and at some point the more accurate one is filtered in.

I like your approach, and maybe reading about other online communities could be useful to your design: for example another edgeryder in Benin is running awareness raising for cardio vascular diseases on a massive facebook group, but the reason they manage to keep it relatively uncontroversial, as far as I understood, is that: 1) they don't deal with curative or palliative care, only preventative and 2) they have moderators ensuring a healthy and accurate stream of information. This is their story.

Also, how can we help?

Re: collective intelligence as cure for controversy

Denise Carry's picture

Hi Noemi,

Thanks for your reply, its much appreciated!

You are definitely right about the controversiality of advice. Main cause of this is, in our opinion, the so-called island approach, where there is little space for a holistic view on the patient! Specialists tend to stay within the boundries of their area of expertise (even if the advice turns out not to be the best for the particular patient).

We realize the challenge concerning our online platform as it is extremely important to ensure a reliable and relevant source of information, especially considering our target group! 
Your already helping by sharing your thoughts, opinion and experience. We are happy to learn more from experts and get in touch with people that can provide relevant advice! 

Carry and Denise

Analysis layer for more credibility

Noemi's picture

Having a platform where a lot of people talk to each other and share experiences that sometimes contradict each other is a lot like a forum, and making it difficult to arrive at sound advice. What would make it into real collective intelligence is research and analysis on nutrition. This would weigh a lot more than advice from a small groups of food experts (as Rune observes below). If you ever want to go that way and structure information online into a research dataset, or wish to include this in your support raising efforts, consider Edgeryders for partnering up. Alberto just wrote about how you can use network analysis and ethnography to analise texts and reach new knowledge that as a platform manager or user you can't readily see, especially if you have contributions in the orders of thousands.

Connecting the (food) dots

Pavlos's picture
Hi @Denise Carry, I think it is important to also focus on the important of digestion/digestability of ingredients (eg. how it changes over age; how it relates with certain foods, the way they are cooked, the environment they are produced/consumed). This is often forgotten (way too often, I'm afraid), even by most "food fanatics" or "health hypers", who are looking for trendy or aesthetic standards, while forgetting the basics of what makes food. Taking the European population as an example, pasta and rice is not enough for healthy nutrition. A healthy and resilient diet also needs sorghum, buckwheat and quinoa. Modern food trends praise local food, but citizens also crave for bamboo and manioca leaves next to tomatoes and eggplants. Our urban realities demand apples and oranges and strawberries but also crave for pineapple, lichees and papayas. How connected are we with the production-distribution process of these ingredients? How are they imported? Are they imported with care? How do agricultural and food policies affect health and nutrition?

Re: Connecting the (food) dots

Denise Carry's picture

Hi Pavlos,

Thank you very much for taking the time to reply to our initiative!

We agree that a varied diet is of big importance to any of us (not only cancer-patients). Can you provide us with more information/sources of research concerning the variety that you are referring to? 

A core aspect that needs to be considered specifically when talking about "anti-cancer" nutrition is that carbs and sugar should be avoided or reduced to a minimum because they "feed" cancer cells. What we are trying to say with this goes hand in hand with our comment on Noemi's post: to come across as a reliable and relevant source of information, the platform needs to state very explicitly what it is focusing on concerning nutrition, still at one point you have to choose a certain framework of aspects which build the basis of, in our case, the platform. No one can ensure a 100% holistic approach, but you can already get a lot further by having this intention. In the end research today might state that milk (just as an example) is bad for us and tomorrow another research might state the opposite. Its all about the framework that you define and the beliefs you formulate as a basis. 

Carry and Denise

Food for though - evidence based

Rune's picture

There seems to be as many ideas of what is healthy foot as there are people. Where do these ideas come from, how do they develop and are they true? New drugs have to test qual or better efficiency by stringent methods. Food (and established treatments) do not !?

Once I searched medline (a database of scientific publications)  to find evidence for recomended daily intake (RDA how many mg of various vitamins etc we need) and found practically no research evidence. What we eat seems to be a result of a roundtable discussion of 'experts (taught by their professors, taught by their professors,,,,,)' .

Can it really be that there is a enormous hole in healthcare research here?

Could it be an OpenCare challenge to gather all data on diets, vitamins, lifestyle, lifequality ...and do some datamining to provide evidence of dietary recomendations?

 

RE: Food for though - evidence based

Denise Carry's picture
Dear Rune, 
 
Thank you for your comment. You are right by saying that there are many ideas on healthy food and it's very difficult to find evidence for recommended daily intake of various vitamines. Your suggestion to an OpenCare challenge to gather all data on diets etc is indeed also interesting. At this moment for us this scope would be too wide. We want to focus on the group of cancer patients, while we know that besides the battle of their illness they also struggle to gain the right information. As we mentioned in our reply to Noemi's response, we realise the challenge that it's extremely important to ensure a reliable and relevant source of information for this particular group.
 
Denise and Carry

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