Unfortunately, it probably needs to be confrontational. Or rather, if your comments give patients the will and confidence to challenge orthodoxy or at least stop being doormats that's to the good, surely. No matter what your mission statement says, practitioners who are not up to the mark are bound to disagree.
Maybe something about empowering and *informing* shared decision making, so you still emphasise there’s an effort to help educate the patient population.
I like Ruth Bentley’s “empowering shared decision making.” So, maybe “Empowering people with multiple sclerosis to ask the right questions, fully participate in treatment decisions and self-manage their disease.”
I agree self management takes away responsibility from the HCP. We’ve lost enough support without giving them a reason to cut services further. Helping MSers increase their understanding and individuality of their disease.
Prof G, maybe use the word complimentary in the statement. If this is how you see it.
Whenever someone is ahead of the game professionally, there will always be those in the profession that resent them.
I asked ChatGPT to read your post and the comments and come up with some suggestions. Here they are:
Based on the text the comments you've provided, here are a few mission statement suggestions for MS-Selfie that reflect Prof G.'s vision of empowering people with multiple sclerosis while maintaining a collaborative and complementary approach with healthcare professionals:
1. "Empowering People with Multiple Sclerosis to Make Informed Decisions and Collaborate with Healthcare Professionals for Optimal Disease Management."
2. "Enabling Individuals with Multiple Sclerosis to Take Active Control of Their Health Journey and Engage in Meaningful Partnerships with Healthcare Providers."
3. "Elevating Multiple Sclerosis Self-Management through Knowledge Sharing and Fostering Collaborative Conversations with Healthcare Experts."
4. "Inspiring People with Multiple Sclerosis to Embrace Self-Empowerment and Foster Open Dialogues with Healthcare Partners for Enhanced Disease Management."
5. "Facilitating Shared Decision-Making and Equipping People with Multiple Sclerosis with the Knowledge and Confidence to Navigate Their Health Journey."
6. "Empowering Individuals with Multiple Sclerosis to Lead Informed Lives and Forge Synergistic Relationships with Healthcare Professionals for Holistic Disease Management."
7. "MS-Selfie: Bridging Knowledge and Collaboration for People with Multiple Sclerosis and Healthcare Professionals Alike."
8. "Empowering Multiple Sclerosis Warriors to Drive Self-Efficacy and Collaborative Care with Their Healthcare Allies."
9. "Cultivating Empowerment and Collaboration for Enhanced Multiple Sclerosis Self-Management and Comprehensive Healthcare Partnership."
10. "MS-Selfie: Empowering People with Multiple Sclerosis to Navigate Their Journey and Cultivate a Symbiotic Partnership with Healthcare Professionals."
Feel free to customize and combine elements from these suggestions to create a mission statement that resonates with your vision and the feedback you've received from your community.
>>> Bram: Can you make them more concise?
Certainly! Here are more concise versions of the mission statement suggestions:
1. "Empower MS Self-Management, Foster Healthcare Collaboration."
2. "Enable Informed MS Choices, Partner with Healthcare."
3. "Elevate MS Self-Care, Collaborate with Healthcare."
4. "Inspire MS Empowerment, Engage Healthcare Partners."
5. "Fuel MS Knowledge, Foster Healthcare Dialogue."
6. "Empower MS, Forge Health Partnerships."
7. "MS-Selfie: Unite MS Empowerment, Healthcare."
8. "MS Warriors: Empower, Collaborate for Wellness."
9. "Cultivate MS Empowerment, Partner with Care."
10. "MS-Selfie: Empower, Collaborate for MS Health."
Feel free to choose the one that resonates best with your vision and goals for MS-Selfie.
>>>Bram: I like number 5 the most, can you give me an alternative?
"Promote MS Education, Spark Healthcare Interaction"
I am *not* getting any pushback when I mention you as a source. In fact, my neurologist recommended your writings/words on the Barts site when I was first diagnosed. I had my clinic visit this week and we had a solid conversation about HRT, which I knew about because of what I've learned here. In my opinion, you are a trusted research scholar and clinician - at least in my experience at an Academic Medical Center - MS Center in the US. Thank you!
Perhaps you could have mission and vision for the MS-Selfie? 1) a mission stating: "the MS-Selfie will educate and empower people with multiple sclerosis to actively engage in the management of their disease" and 2) a vision statement that: "the MS-Selfie inspires and transforms disease management through education, etc...... .... (what the MS-Selfie modalities are).
Opinion: To say "self-manage" in the mission might imply that the person with MS is to do this on their own, it could be interpreted a solo effort that excludes clinicians and other support entities.
“Empowering people living with multiple sclerosis to manage their condition through education, therefore, inspiring them to ask their healthcare providers the right questions."
As you're way ahead of the curve, perhaps something like the following can help bridge the gap and calm ruffled feathers: "Empowering people with multiple sclerosis to be *partners in their care*, to increasingly self-manage their disease, and to ask the right questions."
In my mind, the goal is a partnership--between pwMS and their care providers, as those care providers still need to be part of the equation. Putting power in patient's hands to self-manage the things they can is fantastic, keeping in mind that what might be appropriate to self-manage for one, may not be appropriate for another. The approach needs to be individualized, with supports in place. In learning theory, scaffolding must be provided to help learners bridge the gap, and that would apply to both patients and providers, as this would be quite a shift in typical care practice. If you scaffold this as a *partnership*, much less resistance may be met. In any partnership, it should be acceptable to have a difference of opinion, the important part is the partners committing to work through that to a resolution.
I agree with others, that stating "self-management" alone makes it sound like the goal is to exclude physicians. While I've had to essentially go around my physicians sometimes, or strongly insist on something and advocate hard for that until I got it, they're still the gatekeepers we have to work with.
I really like the empowering part. The ‘self-management’ bit might feel a bit isolating in a way: ‘I have this illness and now I am tasked with taking care of its management?’ For us people that like taking an active role in it, it is ok, but maybe a newly-diagnosed person might find the idea overwhelming (these are just some thoughts).
Ruth’s comment mentions ‘empowering shared decision-making’ which to me sounds a bit more powerful/collaborative.
‘MS-selfie: Empowering people with MS with knowledge and encouraging them to take an active role in their healthcare journey. This website offers a space for both patients and healthcare professionals to share their voice with the goal of shared decision-making in the fight against MS.’
Empowering people with MS is definitely the way forward, even if it sometimes goes against neurologists who are still in the dark ages. If I hadn’t gone against my neurologist and did my own research I wouldn’t have had aHSCT abroad resulting in the MS being in remission for over four and a half years.
I think "empower" is exactly the right word, but to me "self-management" suggests removing/replacing the role of the physician which then also suggests maybe getting into non-evidence-based (in the sense of snake oil, not things like diet which are complicated to generate evidence for) recommendations. That's not something I want to do, and I don't think docs want that to happen either.
I think the focus is surfacing/sharing evidence-based information (with references!), explaining/translating it to a lay audience so that we can make better decisions and be proactive rather than reactive.
Unwrap and share credible and accurate information to pwMS which will allow self awareness and enlightenment and the ability to seek great health by asking productive questions. The cumulative of these actions will give us our voices back.
If the patient is aware of the disease, he can reach and demand higher levels of quality of life, thus contributing to the better functioning of the health system.
I am afraid sometimes ms selfie is the only good source of information. I dont want to blame neurologist or GP practitioners but info we get here is much better than what we hear from our doctors. I suggest the statement: " If you would like to learn about MS check ms selfie".
Email suggestion:
Knowledge is power: Learn, Advocate, Improve ...
Unfortunately, it probably needs to be confrontational. Or rather, if your comments give patients the will and confidence to challenge orthodoxy or at least stop being doormats that's to the good, surely. No matter what your mission statement says, practitioners who are not up to the mark are bound to disagree.
On the MS-Selfie microsite we have the slogan 'Empowering shared decision making'. This perhaps helps clinicians to feel it is a partnership! Ruth B
Maybe something about empowering and *informing* shared decision making, so you still emphasise there’s an effort to help educate the patient population.
I like Ruth Bentley’s “empowering shared decision making.” So, maybe “Empowering people with multiple sclerosis to ask the right questions, fully participate in treatment decisions and self-manage their disease.”
I agree self management takes away responsibility from the HCP. We’ve lost enough support without giving them a reason to cut services further. Helping MSers increase their understanding and individuality of their disease.
Prof G, maybe use the word complimentary in the statement. If this is how you see it.
Whenever someone is ahead of the game professionally, there will always be those in the profession that resent them.
Yes, you said that perfectly!
I’m late to the party, but hear hear!
I asked ChatGPT to read your post and the comments and come up with some suggestions. Here they are:
Based on the text the comments you've provided, here are a few mission statement suggestions for MS-Selfie that reflect Prof G.'s vision of empowering people with multiple sclerosis while maintaining a collaborative and complementary approach with healthcare professionals:
1. "Empowering People with Multiple Sclerosis to Make Informed Decisions and Collaborate with Healthcare Professionals for Optimal Disease Management."
2. "Enabling Individuals with Multiple Sclerosis to Take Active Control of Their Health Journey and Engage in Meaningful Partnerships with Healthcare Providers."
3. "Elevating Multiple Sclerosis Self-Management through Knowledge Sharing and Fostering Collaborative Conversations with Healthcare Experts."
4. "Inspiring People with Multiple Sclerosis to Embrace Self-Empowerment and Foster Open Dialogues with Healthcare Partners for Enhanced Disease Management."
5. "Facilitating Shared Decision-Making and Equipping People with Multiple Sclerosis with the Knowledge and Confidence to Navigate Their Health Journey."
6. "Empowering Individuals with Multiple Sclerosis to Lead Informed Lives and Forge Synergistic Relationships with Healthcare Professionals for Holistic Disease Management."
7. "MS-Selfie: Bridging Knowledge and Collaboration for People with Multiple Sclerosis and Healthcare Professionals Alike."
8. "Empowering Multiple Sclerosis Warriors to Drive Self-Efficacy and Collaborative Care with Their Healthcare Allies."
9. "Cultivating Empowerment and Collaboration for Enhanced Multiple Sclerosis Self-Management and Comprehensive Healthcare Partnership."
10. "MS-Selfie: Empowering People with Multiple Sclerosis to Navigate Their Journey and Cultivate a Symbiotic Partnership with Healthcare Professionals."
Feel free to customize and combine elements from these suggestions to create a mission statement that resonates with your vision and the feedback you've received from your community.
>>> Bram: Can you make them more concise?
Certainly! Here are more concise versions of the mission statement suggestions:
1. "Empower MS Self-Management, Foster Healthcare Collaboration."
2. "Enable Informed MS Choices, Partner with Healthcare."
3. "Elevate MS Self-Care, Collaborate with Healthcare."
4. "Inspire MS Empowerment, Engage Healthcare Partners."
5. "Fuel MS Knowledge, Foster Healthcare Dialogue."
6. "Empower MS, Forge Health Partnerships."
7. "MS-Selfie: Unite MS Empowerment, Healthcare."
8. "MS Warriors: Empower, Collaborate for Wellness."
9. "Cultivate MS Empowerment, Partner with Care."
10. "MS-Selfie: Empower, Collaborate for MS Health."
Feel free to choose the one that resonates best with your vision and goals for MS-Selfie.
>>>Bram: I like number 5 the most, can you give me an alternative?
"Promote MS Education, Spark Healthcare Interaction"
I am *not* getting any pushback when I mention you as a source. In fact, my neurologist recommended your writings/words on the Barts site when I was first diagnosed. I had my clinic visit this week and we had a solid conversation about HRT, which I knew about because of what I've learned here. In my opinion, you are a trusted research scholar and clinician - at least in my experience at an Academic Medical Center - MS Center in the US. Thank you!
Perhaps you could have mission and vision for the MS-Selfie? 1) a mission stating: "the MS-Selfie will educate and empower people with multiple sclerosis to actively engage in the management of their disease" and 2) a vision statement that: "the MS-Selfie inspires and transforms disease management through education, etc...... .... (what the MS-Selfie modalities are).
Opinion: To say "self-manage" in the mission might imply that the person with MS is to do this on their own, it could be interpreted a solo effort that excludes clinicians and other support entities.
that's my two cents :)
My suggestion is:
Arming pwMS with fact-based information in order to make better decisions regarding treatment of their disease.
I am also a team member at Solving MS, which funds and tracks clinical trials for pwMS. I’ll pass along the community’s pertinent suggestions too!
“Empowering people living with multiple sclerosis to manage their condition through education, therefore, inspiring them to ask their healthcare providers the right questions."
As you're way ahead of the curve, perhaps something like the following can help bridge the gap and calm ruffled feathers: "Empowering people with multiple sclerosis to be *partners in their care*, to increasingly self-manage their disease, and to ask the right questions."
In my mind, the goal is a partnership--between pwMS and their care providers, as those care providers still need to be part of the equation. Putting power in patient's hands to self-manage the things they can is fantastic, keeping in mind that what might be appropriate to self-manage for one, may not be appropriate for another. The approach needs to be individualized, with supports in place. In learning theory, scaffolding must be provided to help learners bridge the gap, and that would apply to both patients and providers, as this would be quite a shift in typical care practice. If you scaffold this as a *partnership*, much less resistance may be met. In any partnership, it should be acceptable to have a difference of opinion, the important part is the partners committing to work through that to a resolution.
I agree with others, that stating "self-management" alone makes it sound like the goal is to exclude physicians. While I've had to essentially go around my physicians sometimes, or strongly insist on something and advocate hard for that until I got it, they're still the gatekeepers we have to work with.
I really like the empowering part. The ‘self-management’ bit might feel a bit isolating in a way: ‘I have this illness and now I am tasked with taking care of its management?’ For us people that like taking an active role in it, it is ok, but maybe a newly-diagnosed person might find the idea overwhelming (these are just some thoughts).
Ruth’s comment mentions ‘empowering shared decision-making’ which to me sounds a bit more powerful/collaborative.
‘MS-selfie: Empowering people with MS with knowledge and encouraging them to take an active role in their healthcare journey. This website offers a space for both patients and healthcare professionals to share their voice with the goal of shared decision-making in the fight against MS.’
Empowering people with MS is definitely the way forward, even if it sometimes goes against neurologists who are still in the dark ages. If I hadn’t gone against my neurologist and did my own research I wouldn’t have had aHSCT abroad resulting in the MS being in remission for over four and a half years.
I think "empower" is exactly the right word, but to me "self-management" suggests removing/replacing the role of the physician which then also suggests maybe getting into non-evidence-based (in the sense of snake oil, not things like diet which are complicated to generate evidence for) recommendations. That's not something I want to do, and I don't think docs want that to happen either.
I think the focus is surfacing/sharing evidence-based information (with references!), explaining/translating it to a lay audience so that we can make better decisions and be proactive rather than reactive.
Agreed.
Good to have a statement along these lines. Like others not sure about self-manage. How about 'look after themselves' and 'ask informed questions'?
Unwrap and share credible and accurate information to pwMS which will allow self awareness and enlightenment and the ability to seek great health by asking productive questions. The cumulative of these actions will give us our voices back.
Our group, Solving MS. adores you Prof. G. We follow MS Selfie and without a doubt your information thoroughly empowers us. Ty
Our group is brilliant. Make sure you check the scientific updates on the db.
➡️ https://solvingms.org/research-database
If the patient is aware of the disease, he can reach and demand higher levels of quality of life, thus contributing to the better functioning of the health system.
Keep on the great work !!
I am afraid sometimes ms selfie is the only good source of information. I dont want to blame neurologist or GP practitioners but info we get here is much better than what we hear from our doctors. I suggest the statement: " If you would like to learn about MS check ms selfie".