- 2020.12
- Draft version of the "spetspatient" framework
Authors: Sara Riggare, Therese Scott Duncan, Maria Hägglund. Introduction In the Me ...
6 Dec 2020
- 2020.11
- Tracking of COVID-19
Edit on 16 December 2020: I am now almost back to "normal" (whatever normal is when livin ...
23 Nov 2020
- 2020.07
- PhD trajectory update
I figured that an update on my PhD trajectory was in order so here goes: My applic ...
14 Jul 2020
- 2019.07
- “But Sara, why would patients want to do research on themsel ...
I think that those who know me will agree that I am not often lost for words. However, wh ...
23 Jul 2019
- Some key aspects of patient-centered research
It is a truth universally acknowledged that many patients no longer settle for contributin ...
19 Jul 2019
- PatientsLikeMe och kampen om patienters hälsodata
Amerikanska PatientsLikeMe (PLM) är, enligt dem själva, världens största personliga hälson ...
14 Jul 2019
- 2019.06
- What is a 'spetspatient'?
The report "Spetspatienter - en ny resurs för hälsa" (only in Swedish I'm afraid) My n ...
9 Jun 2019
- 2019.02
- Medverkan i Neuropodden
Jag blev intervjuad av Håkan Sjunnesson, Neuropodden och avsnittet släpptes 17 februari 2 ...
18 Feb 2019
- Årets medicinsvensk 2018 / Swede of the year in medicine 201 ...
Foto: Per Riggare Jag utsågs av nyhetsmagasinet Fokus i januari 2019 till årets medici ...
10 Feb 2019
- Från rädd och osäker patient till stolt spetspatient!
Denna text har tidigare publicerats i rapporten "Spetspatienter - en ny resurs för hälsa" ...
5 Feb 2019
- 2019.01
- Stolt spetspatient!
Rapporten "Spetspatienter - en ny resurs för hälsa" Igår var en stor dag: projektet "S ...
30 Jan 2019
- Walking revolutionised
My new friend Potemkin meets my furry friend Shiva Tuesday last week, I got myself a n ...
15 Jan 2019
- Nytt år, nya utmaningar!
Jag brukar le inombords (det syns nog även ofta utifrån) när jag ser hur många tappar ...
9 Jan 2019
- 2018.09
- Ethics and PhD
Background A few days ago I had some disappointing news. I have been working on my PhD ...
16 Sep 2018
- 2018.05
- Vårdmakt eller patientmakt?
Vårdmaktpodden med och av Tobias Perdahl Inspirerad av att just ha lyssnat ...
26 May 2018
- 2018.04
- "Jag vet mer än min doktor" - Kropp & Själ i P1
Jag medverkade i P1:s hälsojournalistiska program Kropp & Själ den 17 april 2018, se ...
18 Apr 2018
- 2017.12
- Artikel i Modern Psykologi
Sara och hennes personliga tränare Antoine Constantinedes. Fotograf: Martin Stenmark. Ur ...
17 Dec 2017
- 2017.09
- Omnämnd i Spanarna i P1
Jag är väldigt stolt över att blivit omnämnd i radioprogrammet Spanarna! Det var den 1 se ...
2 Sep 2017
- 2017.08
- A small round white pill
One of my containers for my morning doses with one morning dose laid out. Every mornin ...
9 Aug 2017
- 2017.06
- The finest compliment I ever had
Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson's Trust die ...
1 Jun 2017
- 2017.02
- Sara the self-tracker
https://www.youtube.com/watch?v=HygHkOmCQmU
23 Feb 2017
- Patientcentrerad eller personcentrerad vård för läkarcentrer ...
Som mångårig kronikerpatient har jag ett väldigt stort personligt intresse att vården fung ...
18 Feb 2017
- 2016.12
29 Dec 2016
- 2016.11
- "01: SARA RIGGARE – PATIENTENS PERSPEKTIV PRIMUM" - Vårdmakt ...
Jag är glad och stolt över att varit den första gästen i Tobias Perdahls Vårdmaktpodden, ...
30 Nov 2016
- 2016.09
- Quantified Self for Parkinson
Kent Unruh: https://youtu.be/0MqinxVAYWU Jasmine Sturr, Full version: https://you ...
20 Sep 2016
- 2016.08
- What is in a fall?
Before my Parkinson's had evolved into the kind with "freezing-of-gait", or FOG for short, ...
29 Aug 2016
- 2016.06
- From The White House to the red house
Last week was a week of contrasts for me. On Tuesday I left Stockholm for New York City an ...
9 Jun 2016
- 2016.03
- Neuroscience - theory and practice
My extra dopamine - on my left arm I'm sure most of you have seen me write once or twi ...
21 Mar 2016
- 2016.02
- 45 and counting
It was my birthday last Friday, on the 19th of February. This year I turned 45 and was hon ...
21 Feb 2016
9 Feb 2016
- 2016.01
- For whose sake is research done - really?
I owe a lot to research. Thanks to an immense number of dedicated researchers, I have acc ...
1 Jan 2016
- 2015.12
- BEAT Parkinson - på svenska
Under en helg i november 2015 var Stockholm platsen för ett nytt (för Sverige) och innovat ...
27 Dec 2015
- BEAT Parkinson - in English
On a weekend in November 2015, Stockholm was the scene for the start of a novel (for Swede ...
27 Dec 2015
- Organising your own "health management system"
Personal View published in BMJ (http://www.bmj.com/content/351/bmj.h6318): "Patients orga ...
27 Dec 2015
- 2015.10
- The Burden of Tracking
Image copied from the article "The quantified self Counting every moment", published in T ...
18 Oct 2015
- Perspectives?
Most people would probably agree that being diagnosed with Parkinson's disease (PD) at age ...
13 Oct 2015
- 2015.08
- "Doktorn i fickan" - Kropp & Själ i P1
Jag medverkade i P1:s hälsojournalistiska program Kropp & Själ, se beskrivning och lä ...
25 Aug 2015
- 2015.06
- Going from researching patients to patients researchers
In September I will be attending one of my favourite conferences for the third time: Stanf ...
26 Jun 2015
- Lena increased her daily "feel-well-time" from three to ten ...
For the last year or so I've been working in a project funded by the Swedish government's ...
24 Jun 2015
- Tomorrow, 2nd June 2015, is my #Parkinsons1day!
Tomorrow on 2nd of June, I will be sharing my experiences with Parkinson's with Gilles Fry ...
1 Jun 2015
- 2015.05
- #Parkinsons1day
#Parkinsons1day is a project initiated by Roni Zeiger and Gilles Frydman of Smart Pati ...
31 May 2015
- 2015.04
- Parkinson's never takes a day off
Parkinson's is a neurodegenerative disease, meaning that it gets worse as time goes by and ...
5 Apr 2015
- 2014.12
- "Liberté, égalité, santé!"
Life in 18th century France was probably far from easy, although less difficult for some. ...
12 Dec 2014
- 2014.11
- Changing the image of Parkinson's disease - one blog at a ti ...
The general image of Parkinson's disease is probably an old man with hands that are shakin ...
15 Nov 2014
- At Quantified Self, I forget I have Parkinson's
If I could only attend one conference a year, I know exactly which one I would choose: Qua ...
1 Nov 2014
- 2014.10
- Healthcare or health?
A google search for "What is health?" just resulted in approximately 23 200 000 hits and I ...
25 Oct 2014
- "Patients Doing It For Themselves" - BBC Radio 4
Very proud to be one of the people interviewed in this BBC Radio 4 program: http://www. ...
10 Oct 2014
- 2014.09
- PD Bootcamp video
My week at the neurorehabilitation centre CNS in Portugal was fantastic and I can't thank ...
2 Sep 2014
- 2014.08
- Victory is mine!
On our 6th day at the centre for neurorehabilitation in Portugal, CNS, it was time for eva ...
24 Aug 2014
- How to make it stick?
Day 1 These last five days at the centre for neurorehabilitation CNS in Portugal have ...
23 Aug 2014
- "Run Parkie, run!"
The "internal feedback system" of people with Parkinson's does not function properly. I ha ...
22 Aug 2014
- Motivation to fight Parkinson's
I have been trying to think of an appropriate symbol for Parkinson's and finally I have fo ...
21 Aug 2014
- The Fight Parkinson's Club
On our way from the airport in Lisbon to the rehabilitation centre Campus Neurológico Sén ...
21 Aug 2014
- Fighting to stay well
Parkinson's is hard work. A friend of mine, on his way to becoming a neurologist, says to ...
16 Aug 2014
- 2014.07
- Chronic disease and self-tracking - part 1: heart rate
Image from the article "The quantified self Counting every moment", The Economist March 3 ...
30 Jul 2014
- 2014.05
- We need a "Copernican Revolution" in healthcare!
Motion of Sun, Earth, and Mars according to heliocentrism (left) and to geocentrism (righ ...
29 May 2014
- "Patients included" for REAL!!!
This is a fantastic campaign on Medstartr by "The Joan of Arc of e-patients" Casey Quinlan ...
25 May 2014
- Quantified Self Europe 2014
This week I am in Amsterdam for the third Quantified Self Europe conference. I am really ...
10 May 2014
- 2014.04
- "The Patient Perspective" from The Journal of Parkinson's Di ...
This is an article written by Jon Palfreman for The Journal of Parkinson's disease, publis ...
5 Apr 2014
- 2014.03
- Nya Karolinska Sjukhuset: var är patienterna????
Bild från http://nkskonferensen.se Det här med patientmedverkan är inte lätt, det vet ...
26 Mar 2014
- 2014.01
- Var är patienterna???????
Fotot kopierat från: http://www.ifl.se/ledande-fragor/ Nu på lördag, den 1/2 ...
26 Jan 2014
- My take on patient participation
In september 2013 I wrote a blog in Swedish fuelled by my frustration over the current sit ...
18 Jan 2014
- 2013.12
- Goal setting in the time of neurodegeneration
The end of another year is approaching - always a good time for reflections, evaluations a ...
30 Dec 2013
- 2013.11
- Travels with Parky
This is an article I wrote for "On The Move", the magazine of Parkinson's Movement on ...
23 Nov 2013
- Medverkan i Hultling & Röör i P4
Jag medverkade i "Hultling & Röör i P4" den 16 november 2013, se information och länk ...
17 Nov 2013
- 2013.10
- Bruised knees and bruised ego...
I have a new friend. She can be seen on the photo here and I picked her up in a shop t ...
25 Oct 2013
- 2013.09
- Konferens om och med RIKTIG patientmedverkan?
De senaste dagarnas gensvar på mina inlägg "Nu får det vara nog!!!" och "Förslag på kontro ...
4 Sep 2013
- Förslag på kontrollfrågor för RIKTIG patientmedverkan
Jag blev faktiskt lite överraskad av gensvaret på mitt inlägg igår. Visst har jag hört per ...
3 Sep 2013
- Nu får det vara nog!!!!
Helt mot bättre vetande och med dåligt samvete för att min familj återigen ser mig jobba l ...
2 Sep 2013
- 2013.08
- SVT 21 augusti 2013 - Därför loggar allt fler hela sina liv
"De loggar allt i sina liv, från löparrundan till sina hjärnvågor. Möt rörelsen Quantified ...
21 Aug 2013
- P1-MORGON ONSDAG 21 AUGUSTI - Medicin-appar förändrar sjukvå ...
"Den nya tekniken är på väg att förändra sjukvården och tillvaron för dig som patient. Med ...
21 Aug 2013
- 2013.07
- Presentation at QSEU 2013
You can read about and watch the talk I gave at the conference Quantified Self Europe in A ...
25 Jul 2013
- 2013.06
- What is the currency in health?
The question of value is an intriguing one. What do we value? Are people judged based ...
26 Jun 2013
- 2013.05
- Patient engagement?????
"Hello, hello. Anyone there?" (Image copied from: http://healthecommunications. wordpress ...
22 May 2013
- 2013.03
- Tokenism or talent?
Being an engaged and knowledgeable patient has a lot of benefits. On a personal level, kno ...
2 Mar 2013
- 2013.02
- 7e Patientsäkerhetskonferensen 29 januari 2013
Foto från @StefanJutterdal:s twitterström. Jag hade glädjen och äran att medverka vid ...
3 Feb 2013
- 2013.01
- Quantifying freezing-of-gait
These are my feet, they have been with me for 42 years soon and they mostly serve me well. ...
31 Jan 2013
- 2012.12
- Health IT and security issues
For someone who has actually studied health informatics, I don't blog as much about health ...
16 Dec 2012
- 2012.11
- Perception part 2
Perception is a strange thing. After my diagnosis of generalized dystonia on the 6th of ...
19 Nov 2012
- Perception part 1
When a person is diagnosed with a serious disease, something happens. Maybe not instantly, ...
18 Nov 2012
- 2012.10
- Healthcare vs Selfcare
I am a doctoral student at a medical university, but I am also a patient. What does th ...
20 Oct 2012
- "Vården flyttar ut på nätet" - från Metro 2012-10-16
http://www.metro.se/metrojobb/varden-flyttar-ut-pa-natet/EVHljp!blOBJZ7EarRj6/ Vården f ...
16 Oct 2012
- Free on-line consultation with a Parkinson's specialist
A few weeks ago, I was introduced to Ray Dorsey (photo) via an email. Ray is an MD and ...
14 Oct 2012
- 2012.09
- My mission is NOT to improve healthcare...
My mission is not to improve healthcare... no, it's not a typo... keep reading... And n ...
21 Sep 2012
- Balancing or not?
I find it very difficult to find the right balance. The problem is of course, that balance ...
19 Sep 2012
- "Egna data ger bättre hälsa" från IT i Vården 2012-09-10
http://itivarden.idg.se/2.2898/1.465013/egna-data-ger-battre-halsa Egna data ger bättre ...
10 Sep 2012
- 2012.07
- Seminarium om patientmakt i Almedalen 4 juli 2012
Jag hade nöjet att få vara med och diskutera Patientmakt under ett seminarium med presenta ...
11 Jul 2012
- Always a patient?
The first week of July every year is a very special week on the magical island of Gotland, ...
2 Jul 2012
- 2012.06
- MyOwnPROMs
This poster was presented at the 10th anniversary conference of Medical Management Center ...
19 Jun 2012
- "From Ideas to Health" - presentation from KI on 30th of May
On the 30th of May, my main PhD supervisor, professor Staffan Lindblad and I gave a joint ...
11 Jun 2012
- Learning through observations
When I was diagnosed with Parkinson’s at the age of 32, I was of course devastated. I had ...
10 Jun 2012
- What is the outcome of healthcare?
As a person living with a chronic disease, I am very grateful to healthcare. I would not b ...
3 Jun 2012
- 2012.05
- "Sociala forskare ger ny forskning" från Tidningen Curie 201 ...
Sociala forskare ...
22 May 2012
- Health is about responsibility
Health is about responsibility. I am not sure of the situation in other countries, but in ...
12 May 2012
- Method description
To evaluate the effects of my medications, I use an app on my iPhone. I don't have the tr ...
7 May 2012
- Very preliminary analysis after two days on new dose
Thank you Zalamanda and Marten, for your comments on my previous post. Of course, I agree ...
7 May 2012
- Results after two days on my new dose
I have compiled the measurements during these last two days, see below. Compared with my b ...
6 May 2012
- New dose day 2
The first day on the tweaked dose went OK, no fantastic change, but I didn't expect that e ...
6 May 2012
- New dose day 1
These last few days have made me even more aware of how extremely dependent I am of my med ...
5 May 2012
- I need a change, I really need a change
I have found myself really struggling for quite some time now. Struggling to move smoothly ...
4 May 2012
- 2012.04
- Is Parkinson's Contagious?
Another recycled blog post, this one was originally written in May 2010. The apple of my ...
22 Apr 2012
- On a Tightrope - Life is a Balance!
This is the very first blog post I wrote in English, first published in April-May 2010. W ...
21 Apr 2012
- 2012.03
- "Sara fick diagnosen Parkinsons sjukdom" - från Mama 2012-03 ...
http://www.mama.nu/Artiklar/Sara-fick-diagnosen-Parkinsons-sjukdom Sara fick diagnosen ...
21 Mar 2012
- PD Quantified Challenge - end of day 3
Results from my first day of evaluating myself can be found in the graph below and the nex ...
12 Mar 2012
- The PD challenge, day 3 - add an app or two
Hmmm... I have realized that the Wii balance exercise/monitoring doesn't give me quite the ...
12 Mar 2012
- PD-Wii Fit Plus Challenge - day 2
Day 2 of my challenge and I realized that the registering of the results has to be altered ...
11 Mar 2012
10 Mar 2012
- My PD-Wii Fit Plus Challenge
Today I am starting a new project: My PD-Wii Fit Plus Challenge. The idea is to investigat ...
10 Mar 2012
- Long time, no posting...
It's been a number of very busy weeks... to say the least... I now feel like I am through ...
9 Mar 2012
- "The quantified self - Counting every moment" from The Econo ...
http://www.economist.com/node/21548493 The quantified self: Counting every moment | The ...
3 Mar 2012
- 2012.01
- Dagens Medicins ST-läkardagar 2012-01-26
Min dag gick i föredragens tecken, eftermiddagen tillbringade jag på Filmstaden Sergel där ...
26 Jan 2012
- Registerdagen 2012 - Svensk Reumatologisk Förening
Jag hade idag nöjet att prata på Svensk Reumatologisk Förenings Registerdag 2012 tillsamma ...
26 Jan 2012
- 2011.12
- Anniversary by Social Media and Health 2.0
One year ago today I met a man. We have so much in common, we share the same values, we ha ...
4 Dec 2011
- When a patient turns researcher
Thursday last I was invited to speak at the yearly conference for the association of Swedi ...
4 Dec 2011
- 2011.11
- My slides from QS2011 Amsterdam
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29 Nov 2011
- Sharing is contagious caring, second day at QS2011 Amsterdam
Getting close to the end of the second and last day of QS2011 Amsterdam and it has been tr ...
27 Nov 2011
- First day of QS Europe 2011 in Amsterdam
My first ever day at an unconference and the impressions have been numerous. I love the id ...
26 Nov 2011
10 Nov 2011
- 2011.10
- Health 2.0 - "The patient joins the team"
Being a student of Health Informatics at the Karolinska Institute has introduced me to a n ...
15 Oct 2011
- 2011.09
- In your face PD!
We all know that excercise is good for us. We do. And those of us with PD know that for u ...
26 Sep 2011
- 2011.07
- Swedish midsummer
Although Sweden's national day is on the 6th of June (and incidentally wasn't made a bank ...
15 Jul 2011
- 2011.05
- Being brave
Last year I did the the bravest thing I have done in my life. And to me being brave has ve ...
17 May 2011
- 2011.04
- The first diagnosis
My previous blog ended: "I did not get back to them", and I did not. However, my mother ...
24 Apr 2011
- The first meeting
I think I was around 13 years old when I first realised that my body did not function the ...
12 Apr 2011
- 2011.03
- Downhill skiing
I don't presume to have a lot of regular readers and probably fewer still will have follow ...
30 Mar 2011
- 2011.02
- "Parkinson går att leva med" - från Expressen Hälsa 2011-02- ...
http://www.expressen.se/halsa/parkinson-gar-att-leva-med/ Parkinson går att leva med | ...
16 Feb 2011
- 2011.01
- The joy of serendipity
Have you heard the story of the Three Princes of Serendip? Serendip is Persian name for Sr ...
29 Jan 2011
- 2010.12
- Christmas in Sweden
Today is the 24th of December and in Sweden this is the day we celebrate Christmas. I know ...
24 Dec 2010
- Me and PD revisited
When I was first given my Parkinson’s diagnosis, my world shattered… Our daughter was 9 mo ...
15 Dec 2010
- 2010.10
- HP goes PD?
As someone who has loved the stories about the underdog wizard from the first time I heard ...
15 Oct 2010
- Glasgow, city of hope and determination (WPC2010)
By first glance, Glasgow might seem like just another city anywhere in the world, with it ...
15 Oct 2010
- Travelling to WPC 2010
My journey to the World Parkinson’s Congress in Glasgow could definitely have had a better ...
15 Oct 2010
- 2010.07
- Meeting others with PD
I know a lot of people with Parkinson’s when newly diagnosed (and also later) don’t want t ...
15 Jul 2010
- 2010.06
- New symptom or not?
I consider myself very lucky for a lot of reasons. To name them all would take up more spa ...
15 Jun 2010
- 2010.02
- "Is Parkinson's contagious?"
The apple of my eye is a 4 ft tall, 45 lbs creature with brown-green eyes and blonde hair, ...
15 Feb 2010
- Optimistic realist with Parkinson's
Parkinson’s is an incurable chronic neurodegenerative disease. None of these words is even ...
15 Feb 2010
- On a tightrope - Life is a balance!
When I was 13 or 14 years old I realised that my body wouldn’t always do what I asked of i ...
15 Feb 2010