Chat 130: When Patients Are Their Own Leaders

By Fanny Gillet and edited by Colleen Young

By Fanny Gillet and edited by Colleen Young

On May 31st, hcsmca-ers gathered together for the monthly evening chat to discuss the concepts of patients as partners and patient-centered cares. This subject was submitted and moderated by Paul Gallant, @HealthWorksBC, who shared these 3 resources: Medical Home Adoption: Road to Patient Satisfaction, CIHR Show Me the Evidence – Guest Editorial on Patients as Partners and Chancellor at TEDMED: Empowering Patients as Partners in Care. The discussion then migrated to an examination of epatient ambassador in the Canadian context – a subject submitted by Jenn Sprung, @mindthecompany.

Let’s start with the first part of the first question.

T1: Patients (pts) as partners concept &/or Patient Centred Care same or different? If different, is either better?

To begin with, some hcsmca-ers expressed their feeling that both patients as partners and patient centred care are lacking and regrettably there are still healthcare institutions in Canada who do not deliver patient-centred care or include them in decision making.

I’m going to be honest – at this point, I would take either PasP OR Pt centred care. We are sadly lacking in both here! #hcsmca

— Jenn Sprung (@mindthecompany) 30 mai 2013

I agree with @mindthecompany I don’t care anymore about the patient-label, I just wish someone would do it. #hcsmca

— Aurelia Cotta (@AureliaCotta) 30 mai 2013

Some chat participants said that patients as partners and patient centred care should co-exist and are the same. However, for others partnership represents a higher-level.

#hcsmca IMO they are the same thing…patients research online so they are partners by default

— Steve Dempsey (@stevedempsey) 30 mai 2013

T1 Many similarities between the 2 concepts however I view partnerships as a step further, empowering the pt in decisions & care #hcsmca

— Sunny Chan (@waisunchan) 30 mai 2013

The majority of the chat members agreed that patients as partners involve collaborative care that also empowers patients, encouraging them to take part in their own care.

Would agree with the many that stated pt’s need to be engaged and already are partners ie.when choosing b/w surgery vs medical mgmt #hcsmca

— Steve Hawrylyshyn (@Steveoph) 30 mai 2013

On this subject, Dr Gia Gison @giagison and Jennifer Nunn @TheRealNurseJen shared their experience as healthcare professionals who also were patients:

@colleen_young Yes it is.Physician to patient difficult but I had to initiate involvement myself in my care (1/2) #hcsmca

— Dr. Gia Sison (@giasison) 30 mai 2013

@colleen_young To get the patient-centric experience up & running eg asking Qs on meds side effect/options.etc (2/2) #hcsmca

— Dr. Gia Sison (@giasison) 30 mai 2013

@healthworksbc @colleen_young @giasison #hcsmca I’ve been both sides. Its not tough if you’re given the opportunity.

— Jennifer Nunn (@TheRealNurseJen) 30 mai 2013

T1B: Who’s best to lead/fund patient as partners (PasP) / patient centred care (PCC) initiatives? Why?

@Colleen_Young expressed that patients have a role to play in these initiatives and her opinion was shared by most of the chat participants.

I think patients should lead or at least be an equal partner in patients as partner initiatives.#hcsmca

— Colleen Young (@colleen_young) 30 mai 2013

@HealthWorksBC also asked who should fund and lead them and hcsmca-ers generally agreed that the government has a role to play in funding.

@healthworksbc YES gov’t should lead. #hcsmca

— Jenn Sprung (@mindthecompany) 30 mai 2013

Hcsmca-ers also mentioned that, in a perfect world, patient centred care should be inherent but unfortunately we still need to advocate for it.

1000% Agree RT @giasison: Patient centered care should be an advocacy and vocation not a commodity not something sold. #hcsmca

— Colin Hung (@Colin_Hung) 30 mai 2013

Then, T2 was launched

T2: Do we have or need a Canadian wide ambassador epatient? Would Cdn patients benefit from Canadian epatients?

Let’s start by clarifying the term “epatient”:

E-patient is a person who uses digital media to further and improve their health #hcsmca

— Sunny Chan (@waisunchan) 30 mai 2013

e = enabled, engaged, empowered – not necessarily electronic or digital #hcsmca

— Colleen Young (@colleen_young) 30 mai 2013

It was underlined that patients need to be able to express themselves and be heard but hcsmca-ers were not sure that patients need a unique ambassador. However, patients need to be represented by ambassadors that for example would know their rights.

T2: Not sure we need a nat’l CDN #epatient, but patients in general need a voice at the healthcare planning table #hcsmca

— Colin Hung (@Colin_Hung) 30 mai 2013

@emily_nicholas8 Agree. Not sure we need an official with a title of “ambassador”. Just need to collect voices of patients together. #hcsmca

— Colin Hung (@Colin_Hung) 30 mai 2013

Anna Bowness Park @bownesspark also underlined the importance of representation agreement and for more details about that concept she shared this definition. @HealthWorksBC also asked hcsmca-ers their opinion regarding a “collective patient voice” and they generally agreed that one voice is not enough. They also reminded that unfortunately there is often just one patient invited in conferences and that has to change. Healthcare professional on the chat affirmed that they would be welcome patient participants at medical conferences. Diversity is primordial to represent all patients and all the issues they are facing. They added that the more the patients are speaking, the more that will lead others to do the same and to empower themselves. But patients need more ways to express themselves for that to successfully happen.

@healthworksbc There can be. Patients banded together and pressed for lower wait times & faster access to certain drugs. #hcsmca

— Colin Hung (@Colin_Hung) 30 mai 2013

Not at all RT @mindthecompany: RT @anetto: Are doctors less inclined to attend a conference including patients?#hcsmca

— Dr Rajiv K Singal (@DrRKSingal) 30 mai 2013

Hcsmca-ers also discussed the presence of US patients in Canadian congresses speaking on behalf of Canadian patients (ie. @epatientdave) and they notably said that one patient can’t represent everyone voice.

@colin_hung ie @epatientdave has been on the Cdn stage quite often. His is a great experience told very well, but 1/2 #hcsmca

— Colleen Young (@colleen_young) 30 mai 2013

But @epatientdave is first to say, he doesn’t represent all.#hcsmca

— Colleen Young (@colleen_young) 30 mai 2013

Finally, hcsmca-ers highlighted the fact that healthcare providers need to help patients to find the right material to learn more about their situation and to create a positive environment where patients can have the possibility to ask all the questions they need.

@colin_hung @afternoonnapper #hcsmca onus is also on creating the moments where pts feel comfortable asking questions/ receiving info.

— Jennifer Nunn (@TheRealNurseJen) 30 mai 2013

Read the full transcript.

Do you know of good examples of patient centred care that you would like to share?

(Patient-centered care / shutterstock)