Exploring Ways to Respectfully Engage with Ostomy Patients

Hello all,

To start with, I am a scientist who works in innovation for a medical device company that sells ostomy products. Since Hollister supports this forum, I'll disclose that I work for them. I have been racking my brain on what approaches, technologies, services, and breakthrough products could help people living with ostomates live the life they want to live, however that is defined.

The best way I might know how to do that is by interfacing, talking, and following/shadowing people who live with an ostomy to gain some insights on how to better serve. Everyone's needs are different, but spending a day with someone with an ostomate either at an amusement park, going out to dinner and a show, or playing board games at home could help give eyes to the path you are on.

I am asking what are some respectful ways I can go about doing this? I know you might be thinking here is some company trying to make a buck, but I do believe that my talents in science and tech could bring something different for our end users and healthcare, so I focus on that aspect more than on how we succeed in making money. I took the job because I think I could make a difference with my talents. Any approaches on ways I can follow the journey, talk to those living with an ostomate, or talk to those who are preparing for having any ostomy surgery would be great.

What are suggestions on how to interact respectfully with a person living with an ostomy?

Aside from giving thoughts on improving the product or accessories, would you be interested in letting me learn about your journey?

I really want to do my job better, and in turn make a difference, so any connection or help is appreciated.

Thanks

Well, this is the place to get that information. Look up history, profiles, ask a question; many will reply.

If you offer compensation for a diary, I think you could get some replies.

For me, it would be having a proper filter that lasts a day or two. If it was located higher up, maybe. Make the bag taller.

Hollister had quiet wear bags, got a note in my last box that they have supply issues and are not going to make them anymore for the time being. They were quiet; I liked them.

Hollister needs to disclose an allergen list for contact allergies… or have a system where if a patient starts reacting, they give a probable list to the provider, so they can problem solve. Or if a patient has a known contact allergy like the picture I included… that ingredient is in so many things under so many names. 

It would greatly help patients and lessen sometimes weeks of unnecessary suffering.

🔒 Login to see image

Hollister needs to make their bags available in several skin shades, or a neutral color. Unsure if the company noticed, but a large number of the population in the United States does not fall under the ‘peach' color of their bags.

Hello Adrian.

Thank you for your post, which (on the face of it), seems like a genuine enquiry and your aims appear plausible.
From my perspective, your comment: “EVERYONE’S NEEDS ARE DIFFERENT” is quite pertinent as I believe that many people with stomas could be helped enormously if they were treated as individuals (with different needs) rather than expecting them to shop around, hoping to find products that may or may not work for them.
I firmly believe that there is a definite and positive role for modern technology in providing devices that are bespoke. 
I make my own devices and have experimented with many different ones just to see if they can be improved for my own purposes. With this experience, I now believe that there should be a bespoke service offering to make devices (probably via 3D printing) to fit perfectly for individuals. The sort of service I would envisage would possibly resemble those services offered by ophthalmologists, hearing aid dispensers, dental technicians, and prosthetics designers and fitters, where there is an overt recognition from the outset that everyone is different. 
Choosing to ‘shadow’ an ostomate might give you a good insight into the day to day life of that particular ostomate but it is unlikely to enlighten you as to the problems that arise for other ostomates.
Reading posts on sites like this might be a useful way to gain insight into the many problems we face, some of which a number of people will have in common. However, bearing in mind the original statement that ‘everyone’s needs are different’, the shadowing approach may have very limited usefulness in guiding your technological decisions. 
If you are interested I would be happy to discuss this with you further either in the open forum or by personal messaging..
I would suggest that you read some of my posts, but for your purposes, the relevant ones might be difficult to sort out from the not so relevant.
Best wishes
Bill 

Adrian, do you have an ostomy? The issue an ostomy related company has is no two people are alike, so trying to accommodate everyone individually is overwhelming. Nearly all ostomy products are made as universal products so they kinda fit everyone. If I were to break my leg, a cast is made to MY leg and not just a generic sized one to fit A leg. I think the list of ostomy stuff prioritized is 1) no allergic issues. 2) no leaking issues/durability 3) comfort. 4)looks. Maybe there are more but that gives you an idea. 

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hmm. I'm concerned.

I understand what you are trying to do. Saying you work for Hollister and being a scientist?

Prove it. If you meet a stranger on a walk or at some convention, and he's coming on as an official, I think... for trust issues, he needs to show credentials, not just words.

You know why I am asking this?

It's because I wonder where the hell you have been all these years? And suddenly... poof! You are this person calling out?

We need to get to know you better before sharing. Just being cautious...

Frankly, I don't know of any scientist who really gives a care about us.

Maybe he just graduated and has the “gonna save the world” mentality like I see all the time at my work with new managers. 🤷‍♂️ A person would think, and I’m sure it does to some extent, an ostomy company would have their own research lab to better their products as technologies improve. Maybe he could go duck hunting with me and see how it is to carry a bag full of decoys in/out, multiple times this season. 🤔😁

So true Bill......"on the face of it". 🤔

Cynical V.J. 😉

It's funny you mention that mentality of saving the world.

Two new ostomates had that same mentality. As a person with a stoma, with this mentality, I get that... respect it.

But... as a layperson... a non-stoma person? Having the mentality—(blows raspberry)

😋...

Show me the credentials. 🤲.

Oh, moments later...

"What Women Want." Was that the movie where Mel Gibson had to wear a line of women's clothing? Got hit by lightning ⚡️⚡️ and was able to read the minds of females?

YO! Adrien... try it. Wear an appliance full of... 💩.

Walk with it. Date with it. Eat with it. Sit with it. Shower with it. Empty it. Repeat... For a month or two. And then... get back to us. You tell us what it's like. And while you're sleeping? Pinch a hole in the bag. And have a good morning.

...I'd be more impressed if he wore a duck costume. Are you still using a crossbow, yes?

This is a no-brainer. Right to know law in NJ.

If the same in Ohio, then you know.

No company should be exempt from it...unless...they are hiding something... and getting

away with it...

Hi Adrian, If you truly want to improve the lives of ostomates, I have two words for you: 'Quality Control'. There have been several posts recently from ostomates who have been using Hollister products and experiencing leaks due to flaws/faults in the product, mainly pouches. I know Hollister wants to increase its profits, just like every other company in the world does, but it cannot be achieved at the expense of quality and dependability. People who use ostomy products need to know they can rely on them. When a consumer product breaks down or stops working, it may be annoying or inconvenient for the user, but having your ostomy appliance break down is on another level, especially if it occurs in a public setting. Quality control and dependability need to be the number one priority.

Terry

Crossbow for turkeys, shotgun for ducks. 

You can find me on LinkedIn, and I get your point. I was starting the conversation on how to approach people in a respectful way.

I can understand skepticism. I would be too, however, with the intent of trying to make a difference, not knowing where this might go, but hoping for the positive.

On a technical note, this is a challenging endeavor to solve with multiple variables and factors. Diversity in end users, a complex health care system from insurance models, to countries, to manufacturers, supply chain, and so forth.

I do believe that it's worth trying to understand.

I do want to thank people for responding, I can’t learn anything without engagement 

Make a bag that absorbs the smell of shit...?

I believe you are who you say you are. I have had an ileostomy since March 23. You can ask me any questions you like and even walk with me for a day or two if it would help others down the road. I have had several problems, as I imagine everyone does. One thing that helped me was the catalog that Edgepark has, which shows all the different companies that make ostomy products and lists all of their products. I think that everyone should get a copy of this when they leave the hospital. Mayo told me that they didn't give the catalog out because they didn't want to endorse any of the companies. There are several things that would help us, but no one seems to be interested. I cut my own barrier rings, so I had to make my own cutter because there is none my size on the market. I would be happy to talk with you.

You say you want to know how to know how to approach us in a respectful way… well we’re all just regular people who happen to have ostomies & we should be treated and approached the same way you would do for anyone else.

I would recommend that you go through our posts, keep a note book and write down questions and then you could post the questions on the forum.  Many of us will reply.

Ultimately I think we all want a comfortable, dependable product.  

Warrior,

The ostomy nurses said the companies were not required to disclose… not sure if that is Ohio-specific, I wouldn't think so, because then at the big hospital I was at, I think we'd have found a way to know, especially since patients can be patients in different states.

The author of this post could surely tell us if he's a scientist with the company stated, if they are required by state/federal to disclose what is in what they are asking ostomy patients to stick against their skin for days at a time.
😁

That is interesting. The right to know I speak of involves where I work with toxic chemicals.

If a material, a liquid, a gas, is hazardous to health, it must be clearly labeled and warnings around the product or on it, visible. Signage.

Dunno who makes Eakin barrier seals, for example.

But that product comes to mind as people have rashes using it...some do, some don't. The majority does. I didn't see any warnings when I ordered it.

Dealing with a rash now from using it for several months, which is under control presently.

...nailed it Kas...🔨🔨.. but I would also suggest...the Mel Gibson approach.

Earn it, own it, wear it. 1 month.

100% agreed with the Mel Gibson approach!

Hi Adrian, welcome to the site. So far, you're the only company rep I've ever seen on a site. I've had my ileo for almost 40 years, and my suggestion is to find a local ostomy group and go to their meetings. You might start by going to uoaa.org and looking up a local group.

In my view, the best people to start shadowing for a few days are ostomy nurses. Spend a few hours or days with them, and you will see a good variety of problems and even get some ideas from ostomy nurses who see and deal with problems day in and day out. They can ask patients if they would like to trial any of your products you have in development, then pass their contact details on to you. I'm very lucky myself; I've had my ileostomy for over 30 years and never really have any problems. I would just like to see ostomy bags that are more environmentally friendly and break down quicker, but I'm sure that's already being worked on.

I would like to see more stoma nurses hired who actually have a stoma to help patients through all the companies that offer supplies.

So many times when ordering supplies, I have asked for help and they could not answer my questions. Honestly, because they didn't know, as they have not experienced any of what we have gone through.

This is sad; I knew hardly anything when I left the hospital. I couldn't get supplies because the Home Health company I chose was crooked, and I didn't know it. They would bring me bits and pieces of items I needed but were charging my insurance. I kicked them to the curb as soon as I figured that one out.

I started ordering supplies myself, still not sure of what I am doing. I have received more help on this site than from any company that I have ordered from.

Adrian, please see my reply to Ron in Michigan.
Thanks!

Hi Adrian

I am pre-op, scheduled for surgery in 2 weeks. Happy to talk, though I am not sure why you are interested in talking to those preparing for surgery when you have folks on here with an ostomy for over 50 years. But if I can be of help, feel free to reach out.

Hello

As you are posting in the capacity of your Career Appointment - perhaps it might be best to post with the Holister Official footer to your postings.

Once one 'crosses the line,' as it were - things can become difficult in terms of confidentiality/appropriateness, etc.

Perhaps links to your own research papers may encourage more of us to respond at a helpful depth - do you have a profile on Research Gate, for example?

Med Tech has its contribution to play - as you will see from my own profile, one has an open mind in many respects, and I support responsible innovation - but also understand the challenges of trade/professional privilege confidentiality, etc.

In the event of an open debate of a technical and medical nature as to product development ideas - yes, sure, you may receive helpful input from members of this forum.

You would also find a warm response in the event you yourself were the recipient of a colectomy intervention.

I wish you well with your endeavors - and just maybe you may engage with a number of folk who may be able to partner and make some informed and valuable contribution from a patient body perspective - but just perhaps you may find you may be extra well received in the event you share the 'science' of your own engagement with product development.

I am prepared - through a public forum to share some of my own reasoning to pursue a bagless management of an ileostomy... through involvement with a novel implant device - which has yet to be proven.

But transparency would be a prerequisite.

Best Wishes

from the UK

Jayne

For anyone working in medtech - and specifically within R&D, as has been said before - try posting some very specific, detailed, and focused questions. This shows us your intent and the specific areas, and I guess challenging 'edges' of the R&D that you work with. You may find - if you are sufficiently specific, you will have some very informative data come your way.

Best wishes,

Jayne

Yes, you have a very valid point here - for in order to obtain CE marks etc., the American legislation is more specific than some other territories so far as disclosure is concerned.

I like your thinking... A step of transparency would indeed be a good way to manage an element of engagement with the Patient Base...

The legal playing field, however, is not so transparent as many folk with allergies would like... for competitive edge and liaison with the investors become a tricky issue if not handled within the closet, as it were!

Still, perhaps the poster will be a little more informative as the profile is developed.

For a surface interaction on a PR basis will not encourage full interaction, and there is potential for a good public debate if managed appropriately...

SO PLEASE, WE ENCOURAGE AS MUCH TRANSPARENCY AS HOLLISTER LAWYERS WILL ALLOW - You are invited to post well-factored questions of us.

Best wishes

~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~